Beyond Diagnosis
Information for families dealing with childhood cancer and blood disorders
Compiled by Texas Children’s Cancer and Hematology Centers
Generously funded by Bear Necessities Pediatric Cancer Foundation
Beyond Diagnosis
Information for families dealing with Childhood Cancer and Blood Disorders
Compiled by Texas Children’s Cancer and Hematology Centers
Generously funded by Bear Necessities Pediatric Cancer Foundation
Texas Children’s Cancer and Hematology Centers has put together this handbook of local, national and online resources that are available to patients and families who are facing a cancer or blood disorder diagnosis. There are two types of resources listed in this handbook: educational materials and information about support organizations.
We know how important it is to understand your child’s diagnosis, procedures, and anything related to the treatment process. This handbook will direct you to useful sources of educational materials.
There are many support organizations to help you in this journey. The handbook has identified many organizations that provide emotional support, aid with basic needs, and various programs such as camps, Arts in Medicine, and school reentry. Some of the organizations need an application or a referral in order to access their services. Visit with your social worker if you need help with the application process, or if you have any questions about this handbook.
If a website does not open when you click a link, please copy and paste the link into your web browser.
Table of Contents Disease and Treatment
For more Texas Children’s Hospital-specific resources, please visit texaschildrens.org/cancer.
Download a copy of this directory at texaschildrens.org/beyonddiagnosis
Table of Contents
Table of Contents ...... 2
HEMATOLOGY ...... 5 Disease and Treatment ...... 6 Bone Marrow Failure ...... 6 General Hematology ...... 8 Hemophilia ...... 10 Sickle Cell Disease ...... 11
ONCOLOGY ...... 14 Disease and Treatment ...... 14 Bone Marrow / Stem Cell Transplant ...... 15 Brain Tumor ...... 18 Genetic Predisposition ...... 24 Histiocytosis ...... 25 Leukemia and Lymphoma ...... 26 Solid Tumors ...... 27 Additional Resources ...... 32 Books for Oncology ...... 32 Camps for Oncology ...... 39 Cancer Survivorship ...... 42 Counseling for Oncology ...... 43 Financial Assistance for Oncology ...... 44 Getting through School while on Treatment ...... 47 Kindness Kits ...... 49
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 2 Table of Contents Disease and Treatment
Major Organizations for Oncology ...... 52 Scholarships for Cancer Patients ...... 57 Siblings and Cancer ...... 60 Social Support for Cancer Patients and Families ...... 62 Teens with Cancer ...... 65 Wish Organizations ...... 69
VASCULAR ANOMALIES ...... 70 Disease and Treatment ...... 71 Additional Resources ...... 74 Books ...... 74 Craniofacial ...... 75
General Resources for all Patients ...... 76 Arts in Medicine ...... 77 Clinical Trials ...... 79 Counseling ...... 80 Education ...... 82 Scholarships ...... 82 School ...... 83 Vocational Training ...... 87 End-of-Life ...... 89 Bereavement ...... 89 Hospice ...... 91 Fertility ...... 94 Financial Matters ...... 96 Financial Assistance ...... 96 Insurance ...... 99 Medical Equipment Assistance ...... 102 Medication Assistance ...... 104 Hearing ...... 107 Hotels and Housing ...... 109 Lesbian, Gay, Bisexual, Transgender and Questioning ...... 116
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 3 Table of Contents Disease and Treatment
Palliative Care ...... 118 Parking and Transportation ...... 120 Parking ...... 120 Transportation to the Medical Center ...... 121 Air Transportation ...... 123 Medicaid Transportation ...... 126 Social Support ...... 127 Vision ...... 129 Wigs and Headcoverings ...... 132
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 4 TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS Hematology
HEMATOLOGY Disease and Treatment
Disease and Treatment Bone Marrow Failure
Comprehensive resource for families dealing with aplastic anemia, bone marrow failure, etc. Provides education, publications, and support.
aamds.org/patients/parents Information on bone marrow failure for parents of pediatric patients.
aamds.org/sites/default/files/2014SupportingStudentsWit hBoneMarrowWeb.pdf A guide for parents and school personnel regarding school reentry after treatment for aplastic anemia or another bone marrow failure. Aplastic Anemia and
MDS International aamds.org aamds.org/bone-marrow-garden Foundation Explanation of bone marrow failure, the treatments, side effects, and activity restrictions in The Bone Marrow Garden, a video and slide presentation created especially for children.
aamds.org/sites/default/files/BoneMarrowGardenActivity Pages.pdf Activity sheet and word puzzle
aamds.org/patients/parents/resources A national network of volunteers, including patients and family members, willing to listen and offer comfort and support. Diamond Blackfan Education, research and resources regarding Diamond dbafoundation.org Anemia Foundation Blackfan anemia.
Dyskeratosis Support for patients and families dealing with dcoutreach.org Congenital Outreach dyskeratosis and a registry. A resource for patients and caregivers for education and Fanconi Anemia fanconi.org support. Many free publications available in several Research Fund languages. Shwachman shwachman- A resource for providers/clinicians and registry. Diamond Registry diamond.org
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 6 HEMATOLOGY Disease and Treatment
Severe Congenital depts.washington.e Provides research and guidelines for management of Neutropenia Registry du/registry severe congenital neutropenia.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 7 HEMATOLOGY Disease and Treatment
General Hematology
Alere alerecoag.com Education on monitoring anticoagulation medications
American Society of A resource for families dealing with disorders affecting
hematology.org Hematology blood and bone marrow. Publications, research, resources Provides patients and healthcare providers with Clotcare clotcare.com information on optimal use of antithrombotic and anticoagulant therapy.
Coaguchek coaguchek-usa.com Education on monitoring anticoagulation medications
Cooley’s Anemia
thalassemia.org Information, education, support, and scholarships Foundation
Fanconi Anemia A resource for clinicians and patients regarding Fanconi
fanconi.org Research Fund anemia. Publications, research, etc. Foundation for Women and Girls Provides education, resources and support to women fwgbd.org With Bleeding with bleeding disorders. Disorders
A resource for clinicians and patients, list of safe vs. non G6PD Deficiency favism.org safe drugs and foods.
A resource for clinicians and patients regarding primary Immune Deficiency immunodeficiency diseases. Many pamphlets exist,
primaryimmune.org Foundation including: Our Immune System and School Guide for Students with Primary Immunodeficiency Diseases. Dedicated to advancing the prevention, early diagnosis National Blood Clot and successful treatment of life-threatening blood clots stoptheclot.org Alliance such as deep vein thrombosis, pulmonary embolism, and clot-provoked stroke. cc.nih.gov/ccc/patie National Institute of nt_education/drug_ Fact sheet regarding Warfarin (Coumadin) and Vitamin K Health nutrient/coumadin1 and food interactions. .pdf
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 8 HEMATOLOGY Disease and Treatment
Provides medication assistance, networking, resource National guide, and a library of links, news and information,
Organization of Rare rarediseases.org including databases of diseases, organizations and Disorders subscriptions. National
Neutropenia neutropenianet.org Information and education about neutropenia. Network
Neutropenia Support Articles about neutropenia organized into different
neutropenia.ca Association categories. National Information on the prevention, management and
Lymphedema lymphnet.org supportive care of primary and secondary lymphedema to Network patients and healthcare professionals.
North American Education, support and other resources for health care natfonline.org Thrombosis Forum providers and patients.
Platelet Disorder A resource for patients with ITP that offers many pdsa.org Society of America publications. Provides education on the anticoagulation medication called warfarin. PTINR.com offers a full menu of services, PTINR ptinr.com like lifestyle and safety tips, and other educational resources. Information and support to families with the rare familial Von Hippel Lindau disorder, Von Hippel Lindau Syndrome. Includes a
vhl.org Family Alliance reference handbook for people with VHL, their families and support personnel.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 9 HEMATOLOGY Disease and Treatment
Hemophilia
A resource for clinicians and patients regarding hemophilia. Publications, research, scholarships, etc.
National Hemophilia See also, hemophilia.org/Community-
hemophilia.org Foundation Resources/Scholarships for a list of scholarships. Prospective candidates must check with the sponsor or administrator of each scholarship for eligibility criteria and submission procedures. Camp for boys ages 7-17 with hemophilia. $45, 6-day Camp Ailihpomeh - camp held at Camp John Marc in Bosque County. camp- Texas Hemophilia Scholarships available ailihpomeh.org Summer Camp 713-704-1984 Local chapter of the Dedicated to the treatment and the cure of hemophilia lonestar National Hemophilia related bleeding disorders through the support of hemophilia.org Foundation research, advocacy, education, and other services.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 10 HEMATOLOGY Disease and Treatment
Sickle Cell Disease
EDUCATION
http://web.texaschil Handbook on sickle cell disease from Texas Children’s drens.org/multimed Hospital. ia/flipbook/sickle- cell-handbook Español
nhlbi.nih.gov/health - Sickle cell disease management guidelines for health care National Heart, Lung pro/guidelines/sickl professionals and patients. This site has recommended and Blood Institute e-cell-disease- care plans, education, news, and resources. guidelines Centers For Disease cdc.gov/ncbddd/sic Education, publications, medical statistics and resources Control and klecell about sickle cell disease and sickle cell trait. Prevention
SUPPORT ORGANIZATIONS
Mission is to educate and increase awareness of sickle cell asonefoundation.or As One Foundation trait while encouraging youth to achieve their dreams in g the face of life’s challenges.
Foundation for Provides support, education and resources to women and Women and Girls fwbgd.org girls with blood disorders such as Von Willebrand disease, with Blood Disorders sickle cell disease, etc.
International Offers a college scholarship program to assist individuals Association of Sickle iascnapa.org living with sickle cell disease who will be attending an Cell Nurses and institution of higher learning in the United States. Physician Assistants
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 11 HEMATOLOGY Disease and Treatment
The Periwinkle Foundation develops and provides several camping opportunities for patients of Texas Children's Hospital including Camp YOLO (teen camp), Camp The Periwinkle periwinkle Periwinkle Days at Texas Children’s Cancer and Foundation foundation.org Hematology Centers and Periwinkle Day Camp.
713-807-0191
Organizes fundraisers, special events for the sickle cell The Pin Cushion thepincushiongang. community, blood drives, meal for inpatient families, and Gang org volunteers at the bedside.
Free therapeutic horseback riding center with locations in Self-Improvement Hockley, Spring and Fort Bend. Thru Riding sire-htec.org
Education 281-356-7588 Offers scholarship opportunities to students living with Sickle Cell Disease sickle cell disease and inspires graduates to consider Association of sicklecelldisease.org dedicating their careers to sickle cell research and America treatment. Sickle Cell Comprehensive resource for families dealing with sickle Information Center cell disease. Many resources, such as: Parents Handbook
scinfo.org (Emory Libraries and for Sickle Cell Disease, list of camps, and Medicaid care Information Technology) coordination for families. Sickle Cell sicklecellhouston.or Resource for those living with sickle cell disease. Main Association of
g focus is education, programming and research. Houston Provides education, research awareness, outreach, support group meetings, assistance and numerous other services. Sickle Cell
sicklecelltx.org Association of Texas Hosts Camp Cell-A-Bration, a week-long camp for sickle cell patients between the ages of 6-14.
844-994-HOPE
Sickle Cell Kids sicklecellkids.org Online kids’ education about sickle cell, game format
yourgenesyourhealt Your Genes Your h.org/sickle/ Facts, treatment, testing and screening. Health whatisit.htm
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 12 HEMATOLOGY Disease and Treatment
SUPPORT GROUPS FOR SICKLE CELL
facebook.com/Abo Facebook page for connecting to adult sickle cell support Above The Crisis veTheCrisis group.
sosparentgroup.wix .com/gr8trhstn Supporting our Parent and guardian support group Sicklers facebook.com/grou ps/SOSSupportGro up
SCHOLARSHIPS FOR SICKLE CELL
This scholarship is named after former UNC Chapel Hill sicklecelldisease.org professor, Dr. Kermit B. Nash, this scholarship will give its The Kermit B. Nash / recipient $20,000 over the course of four years, split up Academic kermit-b-nash- into payments of $2,500 per semester. Applicant must Scholarship academic- have sickle cell disease, (not the trait), a GPA of 3.0 or scholarship higher and intend to pursue a 4-year college/university education. Scholarship amount is for 4 years This sickle cell awareness organization awards three Candice's Sickle Cell candicessicklecell scholarships every year to rising college students with Fund fund.org SCD. Each recipient gets $1,500 for college tuition. In honor of Reshod, who passed away in 2012 from sickle cell disease, this scholarship presents rising college The Reshod K. facebook.com/ sophomores and above, who have a GPA of at least 2.5 Robinson Scholarship rkrscholar and who are members of a nationally recognized sickle cell association, with $1,500. The International To apply for one of these $500 scholarships, a student Association of Sickle iascnapa.org/ must have SCD and must either be enrolled in—or been Cell Nurse and scholarship.shtml accepted to—an institution of higher learning (four-year Physicians Assistants university, a trade school, etc.) Scholarship
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 13 TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS Oncology
ONCOLOGY Disease and Treatment
Bone Marrow / Stem Cell Transplant
EDUCATION
The Be The Match Registry® is the national bone marrow donor registry in the United States, American Bone operated by the National Marrow Donor Program Marrow Donor (NMDP). Delete Blood Cancer DKMS is a bone Registry, Search deletebloodcancer.org marrow donor center officially affiliated with the Coordination NMDP, so every person we register is listed on the Center Be The Match Registry®.
212-209-6700 Publications on graft v. host disease, survivorship, National Bone informative resource. Hotline, library,
Marrow nbmtlink.org clearinghouse, suggestions for financial assistance. Transplant Link 1-800-LINK-BMT Center for International Publications about transplant outcomes, best Blood and practice in follow-up care, and more. See their
cibmtr.org Marrow ‘Reference Center’ for a list of over 1,000 Transplant publications, many with data and statistics. Research
Gift Of Life giftoflife.org BMT registry, facts and stats on registry, etc.
Manages the largest and most diverse marrow registry in the world and has educational information on BMT, core blood, donor registry, etc. Also provides educational materials specifically for the child. They have a video called Super Sam versus the Marrow Monsters, which is National Bone an animated video on what to expect throughout
Marrow Donor bethematch.org the transplant process. Program
Their Peer Connect Program allows you to talk with a transplant recipient or caregiver and share experiences
A great e-book explaining the entire BMT process
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 15 ONCOLOGY Disease and Treatment
in a kid friendly manner is available at bridges4kids.org/Disabilities/meandmymarrow.pdf
SUPPORT ORGANIZATIONS FOR BMT
Comprehensive resource regarding marrow Asians for Miracle
a3mhope.org donors that provides education, support and Marrow Matches more. Publications and financial assistance, support and services to BMT. One on one support link system.
See also, bonemarrow.org/resources-for-patients- and-families/publications for medical and Bone Marrow educational handbooks about allogeneic and
bonemarrow.org Foundation autologous transplantation. These include comprehensive information regarding the transplant process and all aspects of follow up care.
1-800-365-1336 Bone Marrow Everything BMT resources, cord blood, monthly Transplant newsletter, online support, etc.
bmtinfonet.org Information Network 888-597-7674 Publications on BMT, support network, support Candlelighters groups at times
Childhood Cancer acco.org
Foundation 1-800-366-2223
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 16 ONCOLOGY Disease and Treatment
Support for bone marrow transplant or any organ transplant issue provides fundraising and public Children’s Organ relations help to people organizing bone marrow
Transplant cota.org transplant drives Organization
1-800-366-2683
Cryobanks A leader in the collection, processing and banking
cryobank.com International of umbilical cord blood stem cells.
This group wants to create a healing place for kids Dec My Room decmyroom.org who are in the hospital for extended period (BMT).
Health Resource Provides support to patients who need bone
and Services bloodcell.transplant.hrsa.gov marrow transplant or core blood transplant. Administration
Fundraising for people with unmet medical
HelpHopeLive helphopelive.org expenses due to cell and organ transplants or catastrophic injuries and illnesses.
Provides physical, emotional and financial support His Grace
hisgracefoundation.org for the patients and families on the Bone Marrow Foundation Transplant Unit of Texas Children’s Hospital.
Bone marrow transplant — leukemia diagnosis. Leukemia & Publications on BMT, disease information
Lymphoma lls.org
Society 1-800-955-4572
National Financial assistance nationwide for bone marrow,
Foundation for transplants.org stem cell, and cord blood patients for transplant- Transplants related care
Scholarships given to deserving students who are TRIO Scholarship trioweb.org/resources/trio- bone marrow transplant candidates, recipients, Program scholarships.html donors or their family members
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 17 ONCOLOGY Disease and Treatment
Brain Tumor
EDUCATION
Provides a free brain tumor dictionary and printable information on brain tumors for families.
Listing of support groups, pen-pal program, information on treatment facilities, sponsors regional town hall meetings, social worker on staff, American Brain symposium offered twice/year and a tri-annual
Tumor abta.org newsletter: The Message Line. Association
See also, the pamphlets: Educating Children and Teenagers and Returning to School
1-800-886-2282 Brain Surgery Educational information regarding brain tumor Information brain-surgery.com and neurosurgery Center Provides educational information about Cancer Net cancernet.nci.nih.gov survivorship, research, cancer care and many other topics. Central Brain A registry of brain tumors in the United States. Tumor Registry There are many publications, a glossary and fact
cbtrus.org of the United sheets with statistics and incidences of brain States tumors in the United States. Primary focus is the neurological, psychological, communicative, psychosocial and educational Lash and impact of brain injuries among children youth and
Associates lapublishing.com young adults. Provides practical, informative, and Publishing affordable materials for families, survivors, health care providers
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 18 ONCOLOGY Disease and Treatment
Publications about brain tumors, including: facts about symptoms, treatments, and clinical trials, and helpful resources and tools for patients and caregivers. Also provides a quarterly newsletter, information hotline, a resource guide for pediatric National Brain patients and a list of support groups.
braintumor.org Tumor Society blog.braintumor.org has information on brain tumors, such as fact sheets, what does metabolism have to do with tumors, etc.
617-924-9997 Provides summaries for patients and families on Pediatric Brain all the current clinical trials as well as contact
Tumor pbtc.org information for institutions. Provides a financial Consortium emergency assistance fund, called The Butterfly Fund. A 368-page comprehensive book that guides the family whose child has been diagnosed with a diffuse intrinsic pontine glioma through this Understanding difficult diagnosis. Chapters are written by the Journey, A pediatric neuro-oncology experts and cover all acco.org/books Parent’s Guide to aspects of treating a child with a DIPG, including: DIPG diagnosis, imaging, pontine function and anatomy, steroid treatment, radiation therapy, radio sensitizers, surgery, chemotherapy and biologics.
SUPPORT ORGANIZATIONS FOR BRAIN TUMOR
A comprehensive resource regarding childhood A Kids Brain
akidsbraintumorcure.org brain tumors, including: publications, support and Tumor Cure more. Provides assistance with financial needs, college Addi’s Faith addisfaithfoundation.org scholarships (for brain tumor) and grief support. Foundation Application process for financial help.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 19 ONCOLOGY Disease and Treatment
A dedicated team of volunteers, patients, survivors, family members, health care Brain Tumor professionals and staff, determined to make the
Foundation of braintumour.ca journey with a brain tumor one full of hope and Canada support.
519-642-7755 Cancer Many articles about cancer, research findings and
Knowledge cancerkn.com educational information about childhood brain Network tumors. The free publication, A Resource Guide for Parents of Children with Brain and Spinal Cord Tumors is Children’s Brain full of practical information regarding topics like
Tumor cbtf.org medical procedures, interruptions to school and Foundation social life, and uncertainty about the future.
866-228-4673 Raises funds for research and increases brain Childhood Brain tumor awareness. Also provides a college Tumor childhoodbraintumor.org scholarship for child undergoing treatment for a Foundation brain tumor or is a brain tumor survivor. Provides fundraising for brain stem glioma The Cure Starts thecurestartsnow.org research and offers support and education Now Foundation materials to families dealing with brain tumors. Brain tumor research, fundraising, educational programs, seminars, meetings and support groups Florida Brain in Florida. Publications like neuro-dictionary,
Tumor floridabraintumor.com anatomy of the brain, etc. Association
954-755-4307 Provides supplementary financial assistance to Friends 4 Michael families, guardians or caregivers with financial friends4michael.org Foundation needs resulting from expenses associated with a child’s brain tumor treatment
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 20 ONCOLOGY Disease and Treatment
Provides rehabilitation therapies to pediatric cancer and brain tumor survivors who continue to suffer due to the neuro-cognitive late-effects of cancer and cancer treatment. Funding for these Foundation Think
thinkagain.org costly, yet needed therapies, has either been Again! denied by the child’s medical insurance company, or insufficiently covered.
310-429-1041 Provides emotional support, education and International referrals for treatment to patients worldwide. Radiosurgery
irsa.org Quarterly Newsletter: Another Perspective. Support
Association 717-260-9808 Provides care and comfort for families dealing with childhood brain and spinal tumors while Making Headway funding medical research geared at discovering makingheadway.org Foundation better treatments and a cure. Many services offered, including: counseling, education, scholarships, and medical research grants. The Matthew Provides direct financial assistance to families, Larson regardless of socio-economic status, brain tumor
Foundation for ironmatt.org type (malignant or benign), or progress of the Pediatric Brain disease. Tumors
Mission 4 Provides financial assistance to families who are mission4maureen.org Maureen burdened with the cost of brain cancer treatment
Dedicated to helping brain tumor patients with emotional and financial support, education, advocacy and funding for brain tumor research. Musella
virtualtrials.com Great publication for newly diagnosed brain tumor Foundation and includes a free brain tumor guide.
888-295-4740
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 21 ONCOLOGY Disease and Treatment
Works with families regarding: patient navigation, financial and prescription assistance, education, Oklahoma Brain computer donations, advocacy and support
Tumor okbtf.org groups. Foundation
405-843-4673 Resource for families dealing with childhood brain tumors that provides education, support, college Pediatric Brian scholarships, etc. See also,
Tumor curethekids.org curethekids.org/assets/documents/family- Foundation support/question_web.pdf
1-800-253-6530 Offers family grants with a child who has been diagnosed with brain cancer 1-17 years the opportunity to apply for $1000 in grants to assist Smiles for Sophie smilesforsophieforever.org with financial hardships. Contact for application Forever
216-346-0913, [email protected] Therapeutic horseback riding center that provides Self- physical, emotional, educational and recreational Improvement benefits. Locations in Hockley, Fort Bend and
sire-htec.org Thru Riding Spring, Texas. Education 281-356-7588 Information, education, support for brain tumor Southeastern patients and their families
Brain Tumor sbtf.org
Foundation 786-505-7283 Provides support to people affected by brain tumors and related conditions.
T.H.E. Brain Trust braintrust.org
877-252-8480 Provides support and resources for caregivers affected by brain tumors and brain-related Tug McGraw
tugmcgraw.org trauma. Foundation
707-947-7124
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 22 ONCOLOGY Disease and Treatment
Voices Against Focuses on research, support and education for
voicesagainstbraincancer.org Brain Cancer those affected by brain tumors.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 23 ONCOLOGY Disease and Treatment
Genetic Predisposition
Raises funds to support research projects and scientific A-T Children’s atcp.org conferences aimed at finding life improving therapies and Project a cure for Ataxia-Telangiectasia.
Children’s Tumor Provides education, resources and promotes research for ctf.org Foundation Neurofibromatosis (NF1/NF2/Schwannomatosis).
Li-Fraumeni Provides education, community events, awareness, and Syndrome lfsassociation.org webinars regarding LFSA. Association
Neurofibromatosis Provides education, support and networking for those nfnetwork.org Network affected by neurofibromatosis.
PTEN Hamartoma Provides education, financial support, and supports Tumor Syndrome ptenfoundation.org research for PTEN harmartoma tumor syndrome. Foundation
Texas Provides education, support, advocacy and funds research Neurofibromatosis texasnf.org for neurofibromatosis (NF1/NF2). Foundation
Tuberous Sclerosis Provides education, support and research regarding tsalliance.org Alliance tuberous sclerosis.
Information and support to families with the rare familial Von Hippel-Lindau disorder, Von Hippel Lindau Syndrome. Includes a vhl.org Alliance reference handbook for people with VHL, their families and support personnel.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 24 ONCOLOGY Disease and Treatment
Histiocytosis
Dedicated to addressing the unique needs of patients Histiocytosis dealing with histiocytosis. Publications, research,
histio.org Foundation resources and general information regarding Langerhans cell histiocytosis.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 25 ONCOLOGY Disease and Treatment
Leukemia and Lymphoma
EDUCATION
Childhood Leukemia Publications, support and patient resources (wish basket,
clf4kids.org Foundation etc.)
Funds research efforts toward finding causes and cures Children’s Leukemia childrensleukemia.o for leukemia. On the website, you can find articles on
Research Association rg childhood leukemia and a patient aid application.
Provides information about myeloma, including research International
myeloma.org and treatment advances, as well as information about Myeloma Foundation IMF, upcoming events, research, education and support. Publications such as: Sibs and Talk about Cancer and Juvenile Chronic Myelomonocytic Leukemia. They also have printable resources for teachers, parents and kids.
A weekly online chat that provides an open forum for young adults dealing with cancer and cancer survivorship
LLS Community, which features a group specifically Leukemia and devoted to the young adult cancer community
lls.org Lymphoma Society Webcasts that feature experts and young adults discussing topics such as the physical, emotional and financial challenges faced by young adults with cancer
Financial assistance for drugs used in care, treatment, and/or control of disease.
914-949-5213 Lymphoma Research Resource for families dealing with lymphoma. Offers
lymphoma.org Foundation publications, research and financial assistance.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 26 ONCOLOGY Disease and Treatment
Solid Tumors
BONE CANCER
EDUCATION
American acco.org/types-of- Group that provides education and support to families Childhood Cancer childhood- affected by childhood cancer. Publications on all types of Organization cancer/bone-cancer cancer, including bone cancer.
sarcomahelp.org/ osteosarcoma.html Lady Shriver Fact sheets about osteosarcoma and Ewing’s sarcoma Sarcoma Initiative sarcomahelp.org/ ewings- sarcoma.html Northwest Supports and educates those living with sarcoma and other Sarcoma nwsarcoma.org rare bone tumor diseases. Provides resources related to Foundation education, support, financial assistance and support groups. ped- Ped-Onc Provides updates on many resources for childhood cancer, onc.org/diseases/ Resource Center including a section about bone cancers.
bone.html Strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, Sarcoma Alliance sarcomaalliance.org guidance, education, and support. Financial assistance for those securing a second opinion. SUPPORT ORGANIZATIONS Advocates for sarcoma patients by funding research and Sarcoma increasing awareness about the disease. Raises money to Foundation of curesarcoma.org privately fund grants for sarcoma researchers and conducts America education and advocacy efforts on behalf of sarcoma patients. AMPUTATION Provides education, support, advocacy, and promotes limb loss prevention. Bi-monthly magazine inMotion. Provides a Amputee amputee- summer camp for kids with limb loss/limb difference, ages Coalition of coalition.org 10–17, free of charge. America
888-267-5669
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 27 ONCOLOGY Disease and Treatment
Challenged Seeks to provide opportunities and support to people with challenged Athletes physical challenges, so they can pursue active lifestyles athletes.org Foundation through physical fitness and competitive athletics. City of Houston houstontx.gov/park Check out the sports available for youth and adults with Adaptive Sports s/adaptivesports.ht mobility constraints. They offer adaptive yoga, wheelchair and Recreation ml basketball, adaptive aquatics and more. Provides national leadership and opportunities for individuals with disabilities to develop independence, Disabled Sports disabledsportsusa.o confidence, and fitness by participating in community sports, USA rg recreation and education.
301-217-0960 I-CAN Children’s Promotes education, support, information, and Amputee child-amputee.net empowerment. Extensive mentor program available. Network
ITT/Hartford Ski One of the nation’s largest winter sports festivals for people skispec.org Spectacular with disabilities.
Provides college scholarships and prosthetics for the benefit Cancer Survivors cancersurvivors of persons diagnosed with cancer, receiving treatment for Fund fund.org cancer or in remission. Payment assistance for lower limb prosthetic care to amputees who have no other means to pay, including Medicare, insurance coverage or state assistance. Limbs for Life limbsforlife.org
866-524-3949 [email protected] Helps those with limb loss achieve an improved quality of life with the most appropriate functional prosthesis. New MPI Muilenburg amputees are invited for a pre-surgical visit to learn more mpihouston.com Prosthetics about the practice, meet practitioners, and see the prosthetic technology available for each individual’s varied needs. Pamphlets about recreational activities for amputees. Listings of support groups, resources, referrals. $25 National national membership includes bi-monthly newsletter, The Amp. Amputation amputation.org Check out the sports available for youth and adults with Foundation mobility constraints. They offer adaptive yoga, wheelchair basketball, adaptive aquatics and more.
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National Sports Winter and summer programs in Winterpark, CO. Center for nscd.org Reservations required, prices vary. Disabilities Therapeutic riding center that provides physical activities, Self- emotional support, education and recreation to people with Improvement sire-htec.org disabilities. Prices vary. Locations in Spring and Fort Bend. Thru Riding
Education 281-356-7588 Coverage for limbs, hearing aids, telephonic equipment, Texas Elks bracing devices, adaptive/assistive devices for health such as Children’s Service texaselks.org seating, positioning, mobility, and integration equipment. Prosthetic Grant Physician must fill out part of application. Call to locate Program nearest Elk Lodge to you.
LIVER TUMOR
American Liver
liverfoundation.org Information, resources, and relevant links for liver cancer. Foundation
Children’s Liver Information about pediatric liver disease, a newsletter,
Association for classkids.org resource links, medical articles, and a parent matching Support Services system that links families for friendship and support.
NEUROBLASTOMA
Educational information, a forum for patients and family member, information about treatment, Children’s palliative care, hospice services, bereavement groups Neuroblastoma cncfhope.org and emotional support. Handbook includes topics Cancer Foundation such as: surviving neutropenia, hearing loss, clinical trial information, etc. Promotes awareness, financially assists families Daxton’s Fish daxtonsfish.com touched by neuroblastoma and raises money for pediatric cancer research.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 29 ONCOLOGY Disease and Treatment
Dedicated to fundraising, support, research, and Neuroblastoma neuroblastoma advocacy for children with neuroblastoma and their Children’s Cancer cancer.org families. Parent to parent network online and a Society newsletter are available.
RETINOBLASTOMA
American Association Provides doctor search, information about childhood eye for Pediatric aapos.org disorders and additional information. Available in Ophthalmology and Spanish and Chinese. Strabismus Information about the diagnosis and treatment of ocular
Eye Cancer Network eyecancer.com tumors, eye cancer, and orbital diseases for patients, their families, and the health professionals who care for them.
National Disseminates information and resources to families
Retinoblastoma eyecancermd.org dealing with emotional pain and anxieties related to Research Support having a child with retinoblastoma.
Retinoblastoma
retinoblastoma.net Information, answers to FAQs, children’s stories, etc. International
ORAL, HEAD AND NECK
Supports individuals touched by facial differences with
AboutFace aboutface.ca peer connections, information, emotional support and opportunities to enhance their life circumstances.
American Head and Focuses on prevention, diagnosis, treatment and
ahns.info Neck Society rehabilitation of diseases of the head and neck.
Head and Neck Provides support, education and research regarding head
headandneck.org Cancer Alliance and neck cancers.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 30 ONCOLOGY Disease and Treatment
Support for People Information on cancers affecting the mouth, head, and
with Oral, Head and spohnc.org neck. Addresses the broad emotional, physical and Neck Cancer humanistic needs of these patients.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 31 ONCOLOGY Additional Resources
Additional Resources Books for Oncology
PRESCHOOL/ELEMENTARY AGE
Chemo, Craziness and Comfort, My Book about Childhood Cancer Practical advice for children diagnosed with cancer between ages 6-12. Warm and funny illustrations and easy to read text that helps the child make sense of cancer and its treatment.
Cozy Cares Journal A fun keepsake for children to document their treatment journey. It is also a treasure for family and friends to experience the cancer journey through the words of a child. Can order a Port-A-Cat to go along with this journal.
American La Fantistica Hannah: Miren todo lo que puedo
Childhood Cancer https://www.acco.org/books hacer! Organization For Spanish-speaking children diagnosed between 1-5 years old. Through real life photos, children identify with Hannah’s hospital stay, special friends, tests, treatment, and germ care.
Life Me Up A coloring book of inspirational pictures for 3-10 year olds with cancer.
Marvelous Marleigh Through real life photos, preschool children are able to identify with Marleigh’s treatments and hospital stays.
Medical Play Kit One of the strongest types of fear is that of
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 32 ONCOLOGY Additional Resources
the unknown— by giving children the opportunity to better understand and mentally prepare for upcoming tests or treatments, the Medical Play Kit helps to familiarize children with procedures to ease their anxiety and fear.
Chemo To The Created by a 5 year old and her family to help Rescue: A
chemototherescue.com her come to terms with her illness and accept Children’s Book the treatments. About Leukemia
Book by Devon and Leah Still about a child I am Leah Strong iamleahstrong.com battling cancer.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 33 ONCOLOGY Additional Resources
http://acs.bookstore.ipgbook.co Jacob Has Cancer m/ Coloring book by the American Cancer His Friends Want to jacob-has-cancer-products- Society. $3.50 Help
9781604430127.php Little Tree: A Story This children’s book is a story of hope and for Children With amazon.com inspiration for children with serious illness or Serious Medical injury. Problems I Still Dream Big: A celebration of life and a reminder to all of Stories of Teens amazon.com us to hold onto our own dreams for the Living with Chronic future, and to remember to dream big. Illness Targeted to young children learning to read, this book will inspire kids to celebrate their individuality through acceptance of others It’s Okay to be amazon.com and self-confidence. This book is in a child- Different friendly format that features Todd Parr's trademark—bold, bright colors and silly scenes. This book helps children who are being Mookey the teased by offering helpful ideas for dealing Monkey Gets Over amazon.com with teasing, and to help them realize their Being Teased own strengths. Alphabetic journey of the sights and sounds My Doctor and Me amazon.com of the doctor’s office. Prepares a child for ABC doctor visit. By Dr. Stephanie Cox Compiled by the founders of the Cure Starts, the book is a compilation of notes their daughter left for them for after she died. She
Notes Left Behind notesleftbehind.com hid the notes in various places around the house for them to find. Also contains some of her diary entries. Book for children battling cancer. Takes you Oncology amazon.com through the emotional frustrations from Stupology being in the hospital. By Marilyn Hershey Book that describes and simplifies some childhood conditions. Attempts to help Taking Cancer To children empathize with cancer and the amazon.com School circumstances for the family. Includes a quiz and tips for teachers for additional facts and ideas. By Cynthia Henry
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 34 ONCOLOGY Additional Resources
Written by Kate Gaynor but we added the YouTube link as well. Book is designed to youtube.com/watch?v=HElK_kK The Famous Hat help children with cancer prepare for
pkgo treatment, namely, chemotherapy and a hospital stay. Why Charlie A story about what happens when a friend is amazon.com Brown, Why? very ill. By Charles Schulz
BOOKS FOR TEENS
A teen journal that allows adolescents a place to write out their feeling and thoughts
Dance In The Rain acco.org/books throughout their cancer journey. This book is accompanied by a wooden pen and pencil set.
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BOOKS FOR PARENTS
Along The Way, Documenting My Child’s Cancer Journey A logbook that provides a way to document medical treatments, hospital contact information, treatment expenditures, and local resources. It also contains information about clinical trials, treatment procedures, blood counts, side effects, a journal section, and a place to take notes.
A Parent’s Guide to Clinical Trials A concise reference guide which explains the process and structure of clinical trials in easy to understand language
A Parent’s Guide to Enhancing the Quality of Life in Children with Cancer A 261-page book written about childhood American cancer from the parents and clinicians point
Childhood Cancer acco.org/books of view. Organization
Educating The Child with Cancer: A Resource for Parents and Teachers An essential resource for families who have faced childhood cancer. Written by researchers in the field, and balanced with parents’ personal experiences, this 334-page book focuses on educational issues for children treated for cancer.
Understanding the Journey, A Parent’s Guide to DIPG A 368-page comprehensive book that guides the family whose child has been diagnosed with a diffuse intrinsic pontine glioma through this difficult diagnosis. Chapters are written by pediatric neuro-oncology experts and cover all aspects of treating a child with a
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 36 ONCOLOGY Additional Resources
DIPG, including: diagnosis, imaging, pontine function and anatomy, steroid treatment, radiation therapy, radio sensitizers, surgery, chemotherapy and biologics.
This group has published books for families of kids with cancer and survivors of childhood Childhood Cancer childhoodcancerguides.org cancer. Books are a mix of medical Guides information and books for parents and children.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 37 ONCOLOGY Additional Resources
BOOKS FOR SIBLINGS
Supportive Sibs Support Group at Child Life currently has a weekly support texaschildrens.org/childlife Texas Children’s group for siblings of pediatric patients. Hospital A 40-page illustrated book for the 3-8 year
Oliver’s Story acco.org/books old siblings of a child diagnosed with cancer. Offered in Spanish as well. A children's book specifically for the healthy siblings of chronically ill, disabled or dying children. This book addresses and focuses upon some of the feelings that may be Hi, My Name is amazon.com experienced by healthy siblings. This book is Jack unique in that it is not illness specific and does not focus on the illness itself. It is appropriate for a variety of illnesses and medical situations When a child is seriously ill, siblings What About Me? experience mixed emotions and hurt feelings. When Brother's amazon.com This book is written by a confused young girl and Sister’s Get and takes you through her experience at the Sick hospital with her brother.
OTHER BOOKS
The Association for Pediatric aphon.org Extensive bookstore Oncology Nursing
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 38 ONCOLOGY Additional Resources
Camps for Oncology
Camp For All hosts campers with cancer, autism, muscular dystrophy, epilepsy, autism, severe burns, sickle cell, cerebral palsy, cognitive challenges, cardiac issues, spinal cord injuries,
Camp for All campforall.org PKU, neurofibromatosis, HIV, dermatological issues and more.
979-289-3752 713-686-5666 Child diagnosed with cancer and family members. candle.org/family-events/camp- Held every October. Free. Camp C.L.I.F.F.
cliff 713-270-4700 Seriously ill children and their siblings, ages 7-15. Camp Hole in the Free, located in Connecticut
holeinthewallgang.org Wall Gang 203-772-0522 Free camp for kids with cancer (ages 6-14), teen camp and young adult camp as well. Some travel Camp Mak-A- scholarships available (camp is located in
campdream.org Dream Montana)
406-549-5987 Children age 6-20 with cancer or blood disorders. Free and kosher
Camp Simcha campsimcha.org
1-800-343-2527 Camp for children with life threatening illnesses. Camp is free but family must pay for Camp Sunshine campsunshine.org transportation. Located in Maine.
207-655-3800 Children’s Information on many camps offered for children Oncology and families affected by cancer
cocai.org Camping Association 803-434-3533
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Offers camps and other educational and Children’s excursion programs throughout the year.
Oncology onestepcamp.org
Services 312-924-4220 Child who has lost an immediate family member (parent, sibling or close friend). Free. Located in Comfort Zone
comfortzonecamp.org Richmond, VA. Camp
1-866-488-5679 Nationwide camping programs for children and young adults with cancer, chronic and life threatening illnesses. Children are given the Dream Street opportunity to enjoy activities they would dreamstreetfoundation.org Foundation normally be restricted from due to their illness, while Dream Street supports their medical needs. Free and will fly kids in from all over the world to participate. A free, week-long outdoor camp for adults who have been diagnosed with cancer at any time in their lives. Experiences are based upon outdoor adventure activities, such as white water kayaking, and during the winter months snowshoeing and Epic Experience epicexperience.org cross-country skiing. Participants are encouraged 2017 to recognize that cancer is a part of their story, but it no longer defines them. Connections with other individuals who share a similar story will create a community that lasts long after their Epic Experience has ended. Young adult cancer fighters and survivors (ages
First Descents firstdescents.org 18–39). Free. Some travel scholarships are available. Children with cancer (6-15) and their families. Free. Happiness Is
happinessiscamping.org In Hardwick, NJ Camping
908-362-6733 Provides a respite in the Texas Outdoors to Hunt with A huntwithaheart.org children with life threatening illnesses. Activities Heart include archery, fishing, guided hunts etc.
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Child with cancer and immediate family members. Lighthouse Free.
lighthousefamilyretreat.org Family Retreat 678-290-2955 The Periwinkle Foundation develops and provides several camping opportunities for patients of Texas Children’s Hospital including Camp Periwinkle, Camp YOLO, Family Camp, Long Term The Periwinkle
periwinklefoundation.org Survivor Retreat, Camp Periwinkle Days at Texas Foundation Children’s Cancer and Hematology Centers and Periwinkle Day Camp.
713-807-0191 Offers outdoor adventures for teen and young adult cancer survivors. They have caregiver hikes, True North Treks truenorthtreks.org and survivor only hikes, and then together hikes. The participants pledge to raise $1200 to attend.
Camp for kids with cancer. Free Special Love
specialove.org Camps 540-667-3774 Self- Therapeutic horseback riding center. Free. Improvement Locations in Hockley, Spring and Fort Bend.
sire-htec.org Thru Riding Education 281-356-7588 This retreat provides an opportunity for kids to Trent’s Retreat trentsretreat.org run and play and laugh and for parents to relax and for families to make memories. Offers programs for camping and retreats. The group is based out of California. The Retreat is Tyler’s Grace open year round to one family at a time. It is tylersgracefoundation.org Foundation basically a place for families to be together and enjoy spending time relaxing and making memories.
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Cancer Survivorship
EDUCATION
Texas Children’s Cancer and Hematology Center’s innovative health care initiative to provide survivors of cancersurvivor. Passport for Care® childhood cancer increased access to medical information passportforcare.org and healthcare follow up guidelines. Survivorship guidelines Focuses on cancer survivorship. Provides information, free Cancer Survivors publications, and support.
csn.cancer.org Network 1-800-227-2345
Children’s Oncology survivorship Long term follow up guidelines for survivors of childhood
Group Guidelines guidelines.org cancer
National Coalition Focuses on cancer survivorship, advocacy, publications
for Cancer canceradvocacy.org and support. Survivorship
National Children’s thenccs.org/suppor Focuses on cancer survivorship. Provides information, free
Cancer Society t-after-treatment publications and support.
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Counseling for Oncology
Toll-free hot line for cancer patients or patient advocacy organizations to obtain referrals for local counseling and support services throughout the U.S. American The referral program aims to connect patients to Psychosocial apos-society.org psychiatrists, psychologists, nurses, and social Oncology Society workers skilled in the management of cancer-related distress.
1-866-276-7443 Provides access to mailing lists that provide support, information, and community to everyone affected by Association of Cancer cancer and related disorders. Develops and hosts
acor.org Online Resources state-of-the-art, internet-based knowledge systems that allow the public to find and use credible information relevant to their illness. One to one counseling, medical care information and
Cancer Care cancercare.org telephone support groups; Spanish speaking available. Also offers financial help. Provides groups, parent-to-parent counseling, Candlelighters practical and emotional support. Also offers meal
Childhood Cancer candle.org passes and grocery certificates (limited supply). Foundation Spanish speaking available Provides clear explanations of the various types of Childhood Cancer childhoodcancer childhood cancer and treatments, emotional support Guides guides.org for every member of the family, and access to helpful resources.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 43 ONCOLOGY Additional Resources
Financial Assistance for Oncology
Assists families touched by cancer in helping with Adam’s Angels adamsangelsministry.or living expenses, meals, transportation, and parking Ministries g fees. Provides assistance with financial needs, college Addi’s Faith addisfaithfoundation.or scholarships (for brain tumor) and grief support. Foundation g Application process for financial help. The Travel for Care program assists eligible families with travel expenses related to active treatment. Alex’s Lemonade alexslemonade.org Covers oncologic diagnoses and cancer Stand Foundation predispositions, including LCH. For criteria, visit alexslemonade.org/travel-for-care. Provides financial assistance, funds cancer research Andrew McDonough and helps spread positivity. Funds for utility, phone, Be Positive (B+) bepositive.org car payment, car insurance and rent are considered. Foundation Must have hospital social worker involved. Assists families with urgent financial needs for Andre Sobel River of children with any catastrophic illness. Assist with andreriveroflife.org Life needs such as ballet shoes for a sibling to rent assistance. Provides monthly grants to families suffering Arms Wide Open aaa.awoccf.org hardship due to their child’s cancer diagnosis. Application on website. Social work referral.
Cancer Financial Resource directory. They help cancer patients and cancerfac.org Assistance Coalition their families manage their financial challenges. Helps patients with chronic disease, cancer and other Chronic Disease life threatening conditions obtain the life saving gooddaysfromcdf.org Fund, Inc. medications they need. Also provides travel assistance. Clayton Dabney Assists families who have children in the last stages claytondabney.org Foundation of terminal cancer, to create everlasting memories.
Working with more than 200 hospitals and cancer centers nationwide, they provide immediate financial Family Reach familyreach.org assistance, education and navigation to families before they hit critical breaking points.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 44 ONCOLOGY Additional Resources
sph.uth.edu/research/ce An interactive map of the various food access-related nters/dell/houston- Food Assistance services in Houston/Harris County. Data was area-food-access- collected pre-hurricane Harvey in 2016-2017 analysis-tool Health Well healthwellfoundation.or Assistance with coinsurance, copayments, Foundation g deductibles and health insurance premiums.
Provides financial assistance to families with a child battling cancer. Social worker will need to make a Heroes For Children heroesforchildren.org referral and assist with the process. Group also has social programs, including: valentine dinner, movie day, etc. Provides short-term financial support for urgent living expenses. Hugs and Kisses hugsandkissesinc.org
561-819-9471 A a unique foundation providing direct support to families. With a thorough but streamlined application Jennifer Ireland process they are able to provide quick aid in paying jif4families.com Foundation those financial obligations that tend to stack up quickly during the toughest of times for families dealing with cancer. Assists families with up to $500 per year in reimbursements for co-pays, medications, and Kasie Helpz Kids khkidz.org counseling services during their child’s battle with cancer. Application on website. 0–19 years Assists with costs related to clinical trial treatment, Lazarex Cancer including transportation, lodging and some lazarex.org Foundation uncovered medical expenses. Application can be accessed through social worker. Leukemia and lls.org/support/financial Lymphoma Society: Assistance with insurance premiums and co-pay -support/co-pay- Co-Pay Assistance obligations. assistance-program Program
Live Like Bella Assists families with emotional and financial livelikebella.org Foundation assistance. Also assists with memorial services.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 45 ONCOLOGY Additional Resources
Services include an online support network for parents of children with cancer, educational National Children’s materials, and financial assistance for treatment- thenccs.org Cancer Society related expenses. Printable publications. They also partner with Agility, a national provider of discount prescription drug cards. Helps with financial and emotional support for Pinkie Swear pinkyswear.org children with cancer and their families. Application required.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 46 ONCOLOGY Additional Resources
Getting through School while on Treatment
American Brain Publications: Educating Children and Teenagers and
abta.org Tumor Association Returning to School
cancer.org/treatme nt/childrenandcanc er/whenyourchildha American Cancer scancer/children- Printable fact sheet on school and child with cancer Society diagnosed-with- cancer-returning-
to-school
American Childhood Order publications for returning to school with cancer
acco.org/books Cancer Organization treatment. Many publications and most are free.
Guidance for School Personnel curesearch.org/Guidance-for-School-Personnel
Guidance for Parents Cure Search for
curesearch.org curesearch.org/Guidance-for-Parents Children’s Cancer
Learning Problems During of After Treatment curesearch.org/Learning-Problems-During-or-After- Treatment Hope cam provides the child with cancer a tablet computer equipped with a webcam, Internet access in the home if the child is without, and works with the child’s Hopecam hopecam.org school to provide them a web cam so the child can participate in classroom activities, and see and talk with their friends. Journey4ACure is a small foundation and one part of their mission is to enhance the lives of kids battling cancer - through the iPad program. iPads facilitate the child’s communication with friends and family during long Journey4ACure journey4acure.org hospital stays, help kids get through treatments, help them stay on track in school, some apps help kids with developing motor skills and they provide entertainment and bring smiles to brave kids battling cancer.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 47 ONCOLOGY Additional Resources
Provides a notebook/tablet computer to kids with cancer keepkids or other life threatening illnesses to help them stay Keep Kids Connected connected.org connected with friends and school while undergoing treatment. Application process. lls.org/sites/default / Leukemia and Publication called: Coping with Childhood Leukemia, Back files/file_assets/chil Lymphoma Society to School Resources Document dhoodleukemialym
phoma.pdf They strive to create connection and diversion to help children face the emotional and physical hardships of Mikey’s Way mikeysway.org long term, debilitating treatment. Provides computers, Foundation iPads and other electronic devices for children with cancer. This monkey and school reentry backpack is for pre- school and elementary aged children who are away from monkeyinmychair.o Monkey In My Chair school because of a cancer diagnosis. This program helps
rg to educate the classmates regarding the child’s medical diagnosis and to keep the child connected with the class.
National Children’s thenccs.org/publica Download publication called An Educational Guide for
Cancer Society tions Friends of Teens with Cancer
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 48 ONCOLOGY Additional Resources
Kindness Kits
Mission is to bring dignity and comfort into the harsh world of childhood cancer and other life-threatening Amanda Hope diseases. They give a free comfy cozy shirt to any child amandahope.org Rainbow Angels receiving chemo. Shirts are designed for easy access to ports or central lines. See social worker for referral code for a free shirt. brennansbuddies.or Brennan’s Buddies Provides care packages and delivers holiday toys g Chemo Duck is a soft, cuddly companion that provides huggable hope and alleviates fear and anxiety. Developed with the help of child life specialists and medical Chemo Duck chemoduck.org professionals, Chemo Duck introduces children and families to their new life and encourages healing through the power of play therapy. Childhood Cancer childrenscancer.org Free bear to any child fighting cancer Research Fund
Through a partnership with Mattel, Curesearch provides curesearch.org/ella- Cure Search every young cancer fighter an Ella doll. Ella dolls can be barbie requested online for the patient or sibling. Handmade dolls filled with love and well wishes. Made for Feel Better Friends fbfdolls.org kids with matching eye and hair color. For children battling cancer and other illnesses. Request a doll online. Photography for families. This group has different fivestarportraits.co Five Star Portraits programs throughout the year for families battling m cancer.
Provides photography for child with cancer. Raises funds Flashes of Hope flashesofhope.org to accelerate a cure for children’s cancer.
Makes hospital gowns for chronically ill children. Gown is Gracie’s Gowns graciesgowns.org personalized with child’s name and match the fabric to child’s interests.
Through their program called ‘Bald is Beautiful’, Jamie’s Jamie’s Hope jamieshope.org Hope offers a free photo shoot for cancer patient, family, before and after loss of hair.
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Provides awareness, encouragement, and connection to Jessie Rees other families in similar situations. Also provides joypacks negu.org Foundation to kids and siblings to foster hope and encouragement. Sign up online Offers opportunities for special moments (a.k.a., ‘hugs’) to children with cancer and their families. 4 kits are available Julia’s Grace juliasgrace to children. They also grant financial assistance (a.k.a., Foundation foundation.org ‘graces’) to families experiencing financial hardship due to their child’s cancer treatment and care costs. Hopper the Cancer Crusher is a therapy toy for children undergoing treatment for cancer. Hopper is equipped with a mediport similar to the ones used to deliver chemotherapy. Hopper is an educational tool, a liaison between doctors, parents, and children, and a lifelong Kelsey’s Dream kelseysdream.org friend. Hopper is soft, plush and lovable; outfitted appropriately with hospital PJ’s and a bandana. Hopper is not only there to keep children company through medical procedures, but in many ways, takes the journey with them. Provides a custom cake for the ill child or sibling to help Icing Smiles icingsmiles.org create a positive memory during a difficult time.
Provides a warrior pack, which is designed to lift spirits Linked with Liam linkedwithliam.org and provide distraction. They also help with Holiday gifts. Makes colorful medical shirts for children fighting cancer who are staying in the hospital for long periods of time. The shirts have snap tape up and down each side to Luke’s Fast Breaks lukesfastbreaks.org replace traditional hospital gowns as a way to help kids feel normal and helping with the mental fight these children face. Operation operation Offers sick children the opportunity to experience snow in Snowstorm snowstorm.org Texas.
packagesofhope.co Sends packages of gifts and toys to children of all ages Packages of Hope m across the United States who are battling cancer. Provides personalized shoes to kids experiencing peachsneetfeet.co Peaches Neet Feet hardship due to cancer or blood disorder. Ages 1–18 m qualify. Apply online. Donates handmade security blankets, quilts and afghans Project Linus projectlinus.org to children undergoing difficult medical situations.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 50 ONCOLOGY Additional Resources
Provides assistance to families with a child receiving cancer treatment to make a child smile. Might be a Riley’s Cause rileyscause.org sporting event, movie passes, travel or a restaurant certificate. Apply online. Sara’s Smiles "Inspiration Kits" contain items in a durable, Sara’s Smiles portable box that will help families stay organized, saras-smiles.org Foundation connect to others, and explore creative ways to encourage smiles. Soft doll friends for kids and resource packets for medical caretakers. 21 illnesses have their own symptom and Shadow Buddies shadowbuddies.org treatment specific buddies – oncology and sickle cell are two of them. Request through Child Life. Helps provide the spirit of Christmas year-round for kids affected by cancer and hematology conditions. Funeral The Stuff the Sleigh thesleigh.org assistance, iPad program, financial assistance and scholarships.
Provides free superhero cape to any child facing life Superfly Kids superflykids.com threatening illness.
Dedicated to providing lasting memories through the art The Tiny Sparrow tinysparrow of photography. For families with a child facing a life Foundation foundation.org threatening illness. Makes a stuffed friend with medical equipment mirroring the child's feeding tube, G tube, etc. A stuffed animal with Tubie Friends tubiefriends.com similar medical equipment can make the process less frightening.
Free Halloween costume to child with medical or special Ween Dream weendream.org needs. Apply online.
They deliver support and encouragement along with gift Yellow Up yellowup.org cards, meals, social outings, etc.
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Major Organizations for Oncology
EDUCATION
cancerkn.com/ category/living- Cancer Knowledge Publications on living with cancer, search for topics that with- Network interest you such as Chemo Brian, etc. cancer/survivorship
-living-with-cancer/ Cancer information from the American Society of Clinical Oncology. Has an entire section on coping with cancer,
Cancer Net cancer.net along with childhood cancer facts, stats, side effects, research, etc. Children’s Their handbook on neuroblastoma, includes topics such
Neuroblastoma cncfhope.org as: surviving neutropenia, hearing loss, information about Cancer Foundation clinical trials, etc.
Overview of all chemo drugs; search by chemo name, side
Chemocare chemocare.com effects, etc. Managed by Cleveland Clinic.
The Children’s Oncology Group Family Handbook is a free e-book that’s available in English, Spanish, and French. Children’s Oncology childrensoncology This is a valuable resource for families as they navigate Group group.org their child’s cancer journey. It provides reliable information about treatment, support and follow-up care.
Information on childhood cancer; mobile app that tracks
CureSearch curesearch.org medications, appointments, side effects, etc.
oncolife.oncolink.or Publications and presentations— not just for childhood OncoLife g cancer
National Cancer List of cancer types and detailed information on each
cancer.gov/types Institute cancer. Young People With Cancer publication
Ped-Onc Resource Listing of resources applicable to all oncology patients,
ped-onc.org Center such as: what is neutropenia, ANC calculator, etc.
A searchable database, made possible by a generous grant from the Ronald McDonald Children’s Charities. The The HOPE Portal searchhope.chla.org HOPE Portal was developed as a key resource for families to access trustworthy information and find assistance.
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SUPPORT ORGANIZATIONS FOR ONCOLOGY
A national network of employees and volunteers who implement research, education, and patient service programs. Although programs differ according to state and province, some widely available programs are patient-to-patient visitation, transportation to American Cancer
cancer.org appointments, housing near treatment centers, Society equipment and supplies, support groups, literature on a variety of topics, summer camps for children with cancer, etc.
1-800-ACS-2345 Free resources include: a yearly bibliography, a quarterly newsletter, books, e-books and various handbooks to help families of children with cancer. American Childhood Some help with outpatient parking. See the “Books”
acco.org Cancer Organization section of this guide for a list of publications available on their website.
855-858-2226
Provides support and financial assistance to families Battle For a Cure of children diagnosed with cancer. At Christmas, battle4acure.org Foundation they will send a $50 gift card to those in need (may reside anywhere in the US). Apply online.
Information about the late effects of a childhood cancer diagnosis and treatment. Scholarship program, web conferences, and continuing education
Beyond The Cure beyondthecure.org for nurses. Beyond the Cure is a survivorship program of The National Children’s Cancer Society.
1-800-813-4673
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Online cancer communities designed to provide timely and accurate information in a supportive environment for parents, caregivers, family members, Association of and friends. Discussions cover: clinical and nonclinical
Cancer Online acor.org issues, advances pertaining to all forms of a specific Resources disease, patient and caregiver experiences, psychosocial issues, new research, clinical trials, long- term side effects and current treatment practices. Provides telephone, online and face-to-face counseling, support groups, education, publications and financial and co-payment assistance. Professional oncology social workers offer
Cancer Care cancercare.org personalized care, and all of our services are free of charge. To find publications on living with cancer, search for topics that interest you such as chemobrain, etc. Children’s Cause for
childrenscause.org Advocacy and policy voice for children with cancer Cancer Advocacy Comprehensive resource for families dealing with Children’s neuroblastoma. Publishes a parent handbook
Neuroblastoma cncfhope.org detailing treatment, but also some aspects of cancer Foundation care that are applicable to other diagnoses (neutropenia, etc.). Provides up-to-date information about childhood cancer from pediatric cancer experts. Has sections for patients, families, and friends to help guide them on how to support a child with cancer. Also has long- term follow-up guidelines for young cancer survivors CureSearch National at survivorshipguidelines.org. These guidelines
Childhood Cancer curesearch.org provide recommendations for screening and Foundation managing late effects that may result from pediatric cancer treatments. This group also has developed a mobile app that allows you to organize treatment dates, track side effects, view reports, see trends, etc.
1-800-458-6223
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 54 ONCOLOGY Additional Resources
The mission of the Curing Children’s Cancer Fund is to find a cure for childhood cancer by providing financial support for some of the country’s leading Curing Children’s
cccfund.org pediatric cancer researchers, including those at Texas Cancer Fund Children’s Cancer Center. The results of the cutting- edge research are shared with physicians around the world and benefit the children under their care. Information on how to advocate for a child’s educational needs as they return to school after cancer treatment. The LIVESTRONG at School curriculum (free at livestrong.org/What-We-Do/Our-
LIVESTRONG livestrong.org Actions/Programs-Partnerships/LIVESTRONG-at- School) offers lessons for grades K–12 to teach students about cancer.
1-866-235-7205 Free educational programs for parents and teachers such as Staying Connected: Facilitating the Learning Experience During and After Cancer. Also has the Trish Greene Back to School Program, which includes Leukemia and
lls.org publications, DVDs, videos and programs that can Lymphoma Society help you discuss a cancer diagnosis with teachers and classmates.
1-800-955-4572 Facilitating real world interaction for caregivers of children affected by cancer. Hosts mom’s nights, LOTUS Meets lotusevents.org couples’ nights, family nights, and a yearly retreat for moms. Lotus Meets is a way to meet others who understand. Publications like Young People With Cancer and a National Cancer
cancer.gov dictionary of cancer terminology Institute 1-800-4-CANCER Services include: online support network for parents of children with cancer, educational materials, publications and financial assistance for treatment- National Children’s
thenccs.org related expenses. They also partner with Agility, a Cancer Society national provider of discount prescription drug cards.
1-800-5-FAMILY
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 55 ONCOLOGY Additional Resources
Pediatric Oncology List of books, pamphlets and other resources for
ped-onc.org Resource Center parents.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 56 ONCOLOGY Additional Resources
Scholarships for Cancer Patients
Offers scholarships for undergraduate college, trade or American Cancer
cancer.org vocational schools to cancer survivors who were Society diagnosed under the age of 25
Andre Sobel River of Provides scholarships for cancer patients and survivors to Life Foundation andreriveroflife.org attend college. Award Ashley Tamburri theashley Provides scholarships for cancer patients and survivors to Scholarship foundation.org attend college. Scholarship for college education and or vocational
Candlelighters candle.org training.
cancerforcollege.or Must be a US resident enrolled in a university or Cancer for College
g community college located in the United States.
cancersurvivors Provides educational scholarships and prosthetics for Cancer Survivor Fund
fund.org cancer patients who live in Texas
Childhood Brain This scholarship is for a brain tumor survivor or a brain Tumor Foundation/ childhoodbrain tumor patient currently undergoing treatment who is
Brittany Truitt tumor.org enrolled in college. Scholarship College scholarship will be awarded to a cancer patient or Friends of Scott friendsofscott.org cancer survivor based on financial need and personal hardship. Scholarships will be awarded as a one-time disbursement Jack’s Ride to each recipient. Fund will be paid by Jack’s Ride to the jacksride.org Scholarship Program school of the recipient’s choice for university, 2-year community college or trade or vocational school. Scholarship for US citizens who have been impacted by leukemia or lymphoma (survivors or member of Jackie Spellman jackiespellman immediate family). Eligible students include: high school Scholarship Fund benefit.org seniors or those attending community college, a four-year university or graduate school.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 57 ONCOLOGY Additional Resources
A non-profit organization that establishes programs, funds research, and provides scholarships to survivors. Seeks to raise awareness and support to childhood cancer, and other life-threatening illnesses that impact
kidsrstrong2.org the lives of children daily. Kidsrstrong2 Provides meals, baskets, social activities and parent support groups to TCH oncology families.
832-736-7775 Aims to financially help childhood cancer survivors with Kids 4 Kids with kids4kidswith educational costs by fundraising, hosting events, and Cancer cancer.org applying for grants.
National Children’s Promotes children’s health through financial assistance, thenccs.org Cancer Society advocacy, support services, education and scholarships.
National Collegiate collegiatecancer.or Provides scholarships to young adults whose lives have Cancer Foundation g been impacted by cancer.
Twenty five, $5,000 undergraduate awards will be given scholarsapply.org/n Northwest Mutual for the upcoming academic year for children impacted by msurvivors cancer. Provides support to patients seeking to initiate or Patient Advocate patientadvocate.or complete a course of study that has been interrupted or Foundation g delayed by a diagnosis of cancer or other life threatening disease. The Simon Cancer Awards scholarships and makes charitable donations to thescf.org/ Foundation camps and educational programs. Scholarship eligibility Scholarships.html Scholarship Program information is available on their website. The Snowdrop Foundation is based in Houston and Snowdrop snowdrop fundraises for cancer research and scholarships for cancer Foundation foundation.org survivors. Scholarship monies are paid directly to the school the recipient has enrolled in. Super Sibs For brothers and sisters of children with cancer. Must supersibs.org Scholarship Program apply during final year of high school
The world’s largest nonprofit funder of childhood brain The Pediatric Brain curethekids.org tumor research. Provides free educational information Tumor Foundation about brain tumors, college scholarships, and more.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 58 ONCOLOGY Additional Resources
Supports young adult cancer survivors in the United States as they recover from the financial impact of cancer The SAMFund for treatment. Through direct financial assistance and free Young Adult thesamfund.org online support and education, The SAMfund helps young Survivors of Cancer adults move forward towards their personal, professional, and academic goals. The Ulman Cancer A leading voice in the young adult cancer movement, Fund for Young ulmanfund.org working at a grassroots level to support, educate, connect Adults and empower young adult cancer survivors
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 59 ONCOLOGY Additional Resources
Siblings and Cancer
EDUCATION
alexslemonade.org/ Alex’s Lemonade Super sibs program is available through Alex’s Lemonade campaign/supersib Stand Stand.
s lls.org/childhood- blood- cancer/about- Leukemia Society Publication for siblings: Sibs & Talk about Cancer childhood-blood- cancer/helping-
siblings-cope cancer.gov/Publicat The NCI has many publications dealing with childhood National Cancer ions/patient- cancer, one specifically for siblings is called When Your Institute education/sibling- Brother or Sister Has Cancer.
has-cancer
SUPPORT ORGANIZATIONS
ACS has lots to offer including: support groups, literature on a large variety of topics, summer camps for children American Cancer with cancer, research and educational programs. Search
cancer.org Society for “siblings”
1-800-ACS-2345 Free services include: an annual bibliography and resource guide, quarterly newsletter, and handbooks to American Childhood
acco.org help families of children with cancer. Search for “siblings” Cancer Organization
1-855-858-2226
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 60 ONCOLOGY Additional Resources
Seeks to increase the peer support and information opportunities for siblings of people with special needs and to increase parents’ and providers’ understanding of sibling issues. Trains local service providers on how to Sibling Support
siblingsupport.org create community-based peer support programs for Project young siblings; hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, life-long, and ever changing concerns
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 61 ONCOLOGY Additional Resources
Social Support for Cancer Patients and Families
GENERAL SOCIAL SUPPORT
Alex’s Lemonade Fact sheets on childhood cancer, journal that can be
alexslemonade.org Stand Foundation printed or request hard copy
American Childhood Books, publications, medical kits; all free to patients and
acco.org Cancer Organization teachers, etc.
Provides basic necessities and personalized care (some biglovecancer Big Love parking, meals, weekly toys, etc.) for patients in an
care.org inpatient setting. Their mission is to eliminate pediatric cancer and to provide hope and support to those who are touched by it. Bear Necessities’ Texas Chapter is funding the development of a new patient literature/education
Bear Necessities bearnecessities.org program at Texas Children’s Hospital. The Texas Chapter also funds Flashes of Hope, an organization that photographs children with cancer to honor their unique life and create memories. Provides emotional, educational and practical support Candlelighters candle.org (parking, meals etc.) for families with childhood cancer diagnosis. This is the local chapter.
chanceforhope Free temporary housing, meal delivery inpatient, gift Chance For Hope foundation.org cards for back to school supplies, research
Provides support through a “buddy” system. This buddy Chemo Angels chemoangels.net provides encouragement and support.
Great source of information to new patients and Chemotherapy chemotherapy caregivers about how families can help- from a doctor Cheerleader cheerleader.com who underwent cancer treatment Focuses on the belief that joy changes lives. They provide Children’s Cancer programs (music, friendship, play, and resources to create joyrx.org Association transformative moments of joy for 20,000 children, teens, and their family members each year. This group gathers
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 62 ONCOLOGY Additional Resources
information and resources in a free book.
A non-profit organization that that establishes programs, funds research and provides scholarships to survivors of Kidsrstrong2 kidsrstrong2.org childhood cancer.
832-736-7775 This group’s mission is to work hand in hand with children L3 Foundation l3foundation.com to raise awareness, support, and funding focused on finding the cure to childhood soft tissue cancer.
lotsahelping Online calendar. Post requests for support like meals, Lotsa Helping Hands hands.com rides to appointments, etc.
Provides peer support, research and advocacy services Momcology momcology.org surrounding childhood cancer. The Periwinkle Foundation develops and provides programs that positively change the lives of children, The Periwinkle periwinkle young adults and families who are challenged by cancer Foundation foundation.org and other life-threatening illnesses and are cared for at Texas Children’s Hospital.
The Snowdrop snowdrop Raises money toward research. Also has a bling for Foundation foundation.org bravery (nominate online) program.
PEER-TO-PEER
Cancer Care cancercare.org Provides telephone, online and support groups.
Imerman Angels imermanangels.org Online peer support program for patients of any age.
This mentoring program provides an opportunity for National Children’s children ages 10-17, who are in treatment, to be thenccs.org Cancer Society partnered with childhood cancer survivors who are now young adults.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 63 ONCOLOGY Additional Resources
The Stupid Cancer App connects you to a network of stupidcancer.org/a peers who understand what you're going through. Stupid Cancer pp They've been there, too. You have a right to know they exist and #sayhello
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 64 ONCOLOGY Additional Resources
Teens with Cancer
EDUCATION
Provides educational information about cancer and tools 13 Thirty Cancer 13thirty.org for coping and healthy living. Many fact sheets on topics Connect like mouth sores, fatigue, and chemo brain.
Supports patient’s 18-40 currently undergoing cancer treatment with services to meet daily needs. It provides home Brenda Mehling health care services, co-payments required by health plans for bmcf.net Cancer Fund medical care, temporary housing, and other expenses for those temporarily unable to pay bills like rent, insurance, and food.
Critical Mass: The The full-time federal advocacy arm of the entire adolescent Young Adult Cancer criticalmass.org and young adult cancer community. Alliance Provides financial assistance to young adults undergoing Dam-Cancer amaddan@dam- cancer treatment and funding innovative non-invasive cancer Foundation cancer.org research. Ages 18-35
Online resources for people affected by cancer, including I Had Cancer ihadcancer.com topics about survivorship, relationship, fertility, school and work, finances, emotional support, awareness and education. Founded by a young adult brain cancer survivor. Research, support, outreach, mobile awareness for teens I’m Too Young For
stupidcancer.org with cancer. Also provides a free Instapeer app for you to This / Stupid Cancer connect with other survivors and find programs and meetups in your town. Provides a support network for young adults with cancer. They have articles on cancer life hacks, exercise, chemo Lacuna Loft lacunaloft.org brain, etc. They provide chemo care kits, activity kits and articles for the patient and caregivers. thenccs.org/file/pu blications/educatio National Children’s Teen guide, parent guide to surviving childhood cancer n-guide-friends- Cancer Society and other educational materials teens-with-
cancer.pdf National Collegiate collegiatecancer.or Provides services and support to young adults who have Cancer Foundation g been diagnosed with cancer. NCCF is committed to
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 65 ONCOLOGY Additional Resources
providing need-based financial support to young adult survivors who are pursuing higher education throughout their treatment and beyond.
Supports young adult cancer survivors in the United States as they recover from the financial impact of cancer The SAMFund for treatment. Through direct financial assistance and free Young Adult thesamfund.org online support and education, the SAMfund helps young Survivors of Cancer adults move forward towards their personal, professional, and academic goals. YSC is dedicated to the critical issues unique to young Young Survival women who are diagnosed with breast cancer. YSC offers youngsurvival.org Coalition resources, connections and outreach so women feel supported, empowered and hopeful. Assistance, Awareness and Advocacy are the pillars of this We Believe organization and how they make a difference. Assistance wbfinc.org Foundation takes many forms: providing financial hardship grants, lost part-time wage grants, Pink Hearts of Hope grants.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 66 ONCOLOGY Additional Resources
SUPPORT ORGANIZATIONS FOR TEENS WITH CANCER
txch.org/ Texas Children’s Nursing, child life and social workers hold a teen group psychosocial- Cancer Center Teen once a month for teenage patients with a cancer program/adolesce Group diagnosis. Ask child life for details nt-program Awards 'Life Interrupted Grants' to young adult patients aged 15-36 undergoing treatment or finished protocol within 6 months, lending help to concentrate on healing. Grant applications are accepted 2-3 times a Allyson Whitney year, depending on funds. Grants cover a wide range of allysonwhitney.org Foundation needs, including, but not limited to: current and residual medical bills, rent, utilities, car and health insurance premiums, IVF treatments, integrative therapies, travel expenses, computer, phone, hair pieces, etc. The maximum amount awarded is $1,500. American Cancer
cancer.org Online groups for childhood and young adult survivors. Society Australian site to support, develop and empower kids and teens living with cancer. Offers resources and promotes understanding internationally. Survivorship CanTeen canteen.org.au specific topics include getting back to normal life after cancer, what if my cancer comes back, relationships after cancer, and taking care of yourself after treatment Helps young adults fighting cancer heal through Dan’s House of danshouseof community, supportive programming and home-away- Hope hope.org from-home services that reduce isolation, decrease financial burdens and nourish hope. Address the physical and emotional needs of adolescent and young adult cancer patients and Dear Jack dearjack survivors. One-on-one patient outreach and support
Foundation foundation.org wellness programs to empower patients and survivors in their healing. cancersupportcom A safe place for teens to connect, to find support, Group Loop munity.org/group- education and hope while dealing with a cancer
loop diagnosis.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 67 ONCOLOGY Additional Resources
Video games that give teens chance to blast their
Hope Lab hopelab.org cancer in a video game
Online blog and resources surrounding health, appearance and social issues for teens facing cancer. Look Good Feel lookgoodfeel This site is designed for teenagers, especially ages 13- Better for teens better.org 16 years old. It has lots of helpful tips on hair loss, wigs, skin care, and appearance
Nicki Leach Provides modest financial assistance to young adults nickileach.org Foundation (18-30) afflicted with cancer.
Computer game. Free 3D shooter video game designed Re-Mission re-mission.net for teens. All related to side effects, bacterial infections, etc.
stupidcancer Connects young adults to others facing cancer The Stupid Cancer show.squarespace diagnosis. Provides a weekly radio show, scholarship Show
.com list, etc.
Extensive information and forums for teens with cancer. Teens Living With teenslivingwith Publications for teens about cancer facts, body issues, Cancer cancer.org school issues, etc.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 68 ONCOLOGY Additional Resources
Wish Organizations
Dreams of a lifetime for persons ages 18–40 with any 3 Little Birds 3littlebirds4life.org cancer, any stage. Dedicated to granting the wishes of children under the age of 21 and diagnosed as having a life-threatening A Special Wish spwish.org disorder. Serves infants to age 20. Foundation, Inc.
800-486-9474 Grants once-in-a-lifetime hunting and fishing experiences to children 18 years old or younger who have a life- threatening illness. Catch a Dream catchadream.org Fountation Operation Liftoff provides air transportation for children with a life threatening illness for a treatment trip.
(662) 324-5700 Brings children with severe challenges, people living with life-threatening illnesses and children with severe Do It for the Love doitforthelove.org challenges to live concerts. Provides up to 4 event tickets to the recipient and their family members, friends or caretakers. Serves terminally ill adults and their families by providing dreamfoundation.or Dream Foundation end of life dreams that offer inspiration, comfort, and g closure. This group grants wishes to adults faced with terminal Fairy Godmother fairygodmother.org illness Provides financial support, develops and implements unique hospital programs, funds innovative research, and Go 4 the Goal go4thegoal.org grants personal wishes. Financial support is limited to availability of foundation funds. Wish granting organization that is dedicated to granting Granted Wish grantedwish.org wishes exclusively in the sports genre. Available for ages 0–25. Make-A-Wish Grants wish to child, ages 0-18, with life threatening wish.org Foundation illness.
Second Wind Dreams secondwind.org Fulfillment of dreams for age 18 plus.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 69 TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS Vascular Anomalies
VASCULAR ANOMALIES Disease and Treatment
Disease and Treatment
DISEASE AND TREATMENT
Cloves Syndrome clovessyndrome.or Group provides support, education and publications. Community g
Cure Hereditary Hemorrhagic Provides education, research updates, links and a curehht.org Telangiectasia newsletter. Foundation
Klippel-Trenaunay k-t.org Provides factual information, resources and links Support Group
Lymphangiomatosis and Gorham Disease lgdalliance.org Provides education, disease fact sheets and more. Alliance
Lymphatic Education lymphatic Support organization that focuses on education, research and Research network.org and advocacy. Network
M-CM Network provides comprehensive medical M-CM Network m-cm.net information about M-CM (MCAP, M-CMTC) and develops programs to promote education and research.
National Support organization that provides education resources Lymphedema lymphnet.org and an e-newsletter. Network, Inc.
Sturge-Weber Support organization that provides informational Syndrome swscommunity.org resources, links, etc. Community
The Sturge-Weber Support organization that provides education, resources sturge-weber.org Foundation and research updates.
SUPPORT ORGANIZATIONS
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 71 VASCULAR ANOMALIES Disease and Treatment
Support organization that provides education and
AboutFace USA aboutface.ca publications.
An organization by and for those affected by cavernous
angiomas and their loved ones, health professionals, and Angioma Alliance angioma.org researchers.
Support group for patients and families that have had an AVM Survivors avmsurvivors.org arteriovenous malformations (AVM).
Birth Defects Publications, research information and resources for birth
Research for birthdefects.org defects. Children, Inc. Information, recommendations, active interchange, and lots of resources about port wine stains and Birthmarks birthmarks.com hemangiomas. Provides a free private newsgroup and e- newsletter.
Blue Rubber Bleb facebook.com/grou Provides a community for families coping with blue Nevus Facebook ps/bluerubberbleb rubber bleb nevus syndrome Support Group aad.org/public/kids A camp for children, ages8-16, with dermatologic / Camp Dermadillo conditions that is held at Camp For All in Burton, TX. You camp-discovery/ must be nominated by a dermatologist to attend. Free. about#dermadillo Focuses on the well-being of people who suffer from CMTC OVM USA vascular malformations, such as CMTC (Van Lohuizen (Van Lohuizen cmtcovm-us.org syndrome), and to stimulate the scientific research of such Syndrome) conditions. Department of State Health Services dshs.state.tx.us/csh Resources for home medical, parent/youth transition Children with Special cn worksheets, brochures, etc. Health Care Needs Services Program Easter Seals — easterseals Support, educate, empower; publications regarding
Houston houston.org individuals with disabilities HHT provides advocacy and support. Includes factual Hereditary information, research updates, helpful links, and a Hemorrhagic hht.org newsletter. Telangiectasia (HHT)
Foundation 410-357-9932
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 72 VASCULAR ANOMALIES Disease and Treatment
Infantile infantile Resource that provides education, publications, etc.
Hemangioma hemangioma.com
Raises awareness of lymphatic malformations and to raise Kennedy’s Cause kennedyscause.com funds to support the research for a cure.
Works to advance research and identify possible causes of lymphatic malformations by supporting a patient Liam’s Land liamsland.org registry and funding further genetic testing and clinical trials. National Resource which provides education, resources, awards
Organization for rarediseases.org grants and networking Rare Disorders
National Provides a blog, education, transportation services and
Organization for novanews.org more. Vascular Anomalies
Provides free surgeries to kids who need them, teaches
Operation Smile operationsmile.org medical personnel. PHP increases the quality of life for children with special Parents Helping php.com needs by providing services, resources, and support for Parents (PHP) children, their families, and caregivers PHACE Syndrome phacesyndromeco Works to raise awareness, promote peer support, fund Community mmunity.org research, finding a cause, and improving treatment
Dedicated improving the lives of Proteus patients by Proteus Syndrome proteus- funding AKT1 research. They focus on providing family Foundation syndrome.org support in the form of education and networking. PTEN Hamartoma Offers education about PTEN syndromes, provides Tumor Syndrome ptenfoundation.org financial support to patients, supports research, and Foundation promotes awareness.
Vascular Birthmarks Factual information, parent networking, physician list,
birthmark.org Foundation newsletter, transportation, insurance, and advocacy.
Dedicated to improving the diagnosis, treatment, and VHL Alliance vhl.org quality of life for VHL (Von Hippel-Lindau disease) patients and their families.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 73 VASCULAR ANOMALIES Additional Resources
Additional Resources Books
Buddy Booby’s BirthMark
Mookey The Monkey Gets Over Being Teased
Little Tree: A Story for Children with Special Medical Problems It’s OK To Be Different!
This is a list of books that are written specifically for Hi, My Name is Jack (A amazon.com children with vascular anomalies and their families. Book for the healthy siblings of chronically ill children)
I Still Dream Big Stories of Teens with Chronic Illness
100 Questions & Answers About Vascular Anomalies
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 74 VASCULAR ANOMALIES Additional Resources
Craniofacial
SUPPORT ORGANIZATIONS
AboutFace
aboutfacecorp.com Networking, information and support International
Children’s Craniofacial
ccakids.com Information networking, and support for families Association
Craniofacial craniofacialfoundation. Networking, information and support, some financial Foundation of
org assistance America Serves patients with severe craniofacial deformities resulting from birth defects, injuries, or disease. FACES — National Addresses three distinct areas: client travel, public
Craniofacial faces-cranio.org awareness and understanding, and information and Association support.
1-800-3-FACES-3 Dedicated to improving the lives of children with Foundation for Faces facesofchildren.org craniofacial differences, including: cleft lip, cleft of Children palate, and other head and facial conditions.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 75 General Resources for all Patients
General Resources for all Patients
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 76 General Resources for all Patients Arts in Medicine
Arts in Medicine The Periwinkle Arts In Medicine Program creates opportunities for self-expression, empowerment and development of coping skills. Making music, singing songs, performing dance, producing plays, writing and telling stories and decorating spaces with visual art enhances the healing environment and treatment experience. Below is a list of the community partners that perform activities with our patients and families.
COMMUNITY ART PARTNERS
Aurora Picture Show aurorapictureshow.org
CityArt Works cityartworks.org
DaCamera dacamera.com
Houston Center for Photography hcponline.org
Houston Symphony houstonsymphony.org
Katy Visual and Performing Arts
kvpac.org Center
Love Street Light Circus ruf.rice.edu/~tannahil/love%20street.html
Museum of Fine Arts Houston mfah.org
Purple Songs Can Fly purplesongscanfly.org
The River (TUTS) tuts.com/river
Watercolor Art Society Houston watercolorhouston.org
Woodlands Children's Museum woodlandschildrensmuseum.org
Writers In The Schools witshouston.org
Young Audiences of Houston yahouston.org
waystogive.texaschildrens.org Volunteer opportunities periwinklefoundation.org/get-involved/volunteer
Making A Mark: An Exhibition of
Art by Children with Cancer and periwinklefoundation.org/what-we-do/arts/making-a-mark Blood Disorders
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 77 General Resources for all Patients Arts in Medicine
periwinklefoundation.org/what-we-do/arts/the-splendid- The Splendid Review
review
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 78 General Resources for all Patients Clinical Trials
Clinical Trials
CLINICAL TRIALS
American Childhood Support organization with many publications,
acco.org Cancer Organization including: A Parent’s Guide to Clinical Trials. The Children’s Oncology Family Handbook is available through the social workers in the cancer center or you Children’s Oncology childrensoncology can download a copy from their homepage. See also,
Group group.org What Is A Clinical Trial? at childrensoncologygroup.org/index.php/what-is-a- clinical-trial Clinical trial information
Children with Cancer: a Guide for Parents cancer.gov/publications/patient-education/guide-for- parents
National Cancer When your Brother or Sister has Cancer: a Guide for
cancer.gov Institute Teens cancer.gov/publications/patient-education/sibling- has-cancer
Taking Part in Cancer Treatment Research Studies cancer.gov/publications/patient-education/cancer- treatment-research-studies Center Watch Clinical Leading source of news, directories, for clinical centerwatch.com Trials Listing Service research. Publications for patients and professionals
Coalition of Cancer cancertrialshelp.org Awareness of clinical trials, search database Cooperative Groups
National Institute of clinicaltrials.gov Information about clinical trials Health
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 79 General Resources for all Patients Counseling
Counseling
COUNSELING
12 step self-help group for those impacted by another’s alcohol use. Also has group for adult
Al-Anon Intergroup houstonalanon.org children of alcoholics. ALATEEN and PRE-ALATEEN. Information on group locations.
Alcoholics 12-step self-help group for those abusing alcohol.
aahouston.org Anonymous Call 24-hour number for nearest group meeting.
Association for the Family and individual counseling (drug and alcohol),
Advancement of aama.org gay violence for adolescence, GED program, HIV Mexican Americans testing, and Spanish speaking available catholiccharities.org/ou Provides individual counseling at multiple locations. r- Catholic Charities of Spanish speaking available. services/strengthening- Galveston — Houston families/counseling- 713-874-6590
services/
The Center for
therapyhouston.org Provides counseling for all areas of support. Creative Resources
Center for Family Counseling for individuals, families, adolescents, and
cffconline.weebly.com Consultation children
Provides family and individual counseling and substance abuse counseling primarily for Spanish Community Family communityfamily speaking clients, but accepts all. Also offers
Centers centers.org counseling for youth with drug abuse, truancy, delinquency and teen pregnancy problems. Spanish speaking available. Provides individual, family and group counseling for adults and children on a medical outpatient basis. Spanish speaking available. Accepts a range of
Depelchin depelchin.org private insurances, plus Medicaid and Chip.
713-861-8136
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 80 General Resources for all Patients Counseling
Provides shelter and counseling services for battered women and their children. Spanish speaking Houston Area
hawc.org available. Women’s Center
713-528-6798 Provides counseling services for individuals, Houston Center for christiancounseling marriage, and family. Also offer groups, workshops,
Christian Counseling houston.com and seminars. Provides individual counseling and therapy for individuals and groups (on occasion). Spanish Houston Galveston
talkhgi.org speaking available. Institute
713-526-8390 Provides family and individual Christian counseling Interface Samaritan and workshops.
houstonsamaritan.org Counseling Center 713-626-7990 Provides counseling related to family problems and psychiatric evaluation.
Jewish Family Services jfshouston.org
713-667-9336 Provides group and individual counseling.
MHMRA mhmraharris.org 713-970-7000 24/7, free and confidential support line for people in distress, prevention and crisis resources for you or National Suicide suicideprevention your loved ones, and best practices for professionals. Prevention Hotline lifeline.org
800-273-TALK Provides referral service. Spanish, French, Vietnamese, Cantonese, and Mandarin speakers United Way Referral unitedwayhouston.org/ available.
Service our-211-helpline
713-957-4357
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 81 General Resources for all Patients Education
Education Scholarships
Federal Student Aid fafsa.ed.gov Free application for federal student aid
Promotes academic excellence and provides an opportunity for outstanding minority students (African The Gates
gmsp.org American, American Indian, Alaskan Native, American Millennium Scholars Asian, Hispanic American) with significant financial need to reach their full potential This scholarship provides funding for college/vocational education to pediatric hematology/oncology patients, on Gulf Coast APON Visit our social work or off therapy. Ask for Maureen Carroll. Scholarship office
832-465-8992 4-h.org/resource- Grants, awards, and scholarships. They have disability National 4-H Council library/grants- specific scholarships.
awards
Patient Advocate patientadvocate.or Scholarships based on need
Foundation g
Ronald McDonald Scholarships to students in financial need who have House Charities demonstrated academic achievement, leadership and
rmhc.org National Scholarship community involvement. Since 1985, more than $56 Program million in scholarships have been awarded. Offers financial assistance to young adults with Down The Joshua O’Neill syndrome who wish to enrich their lives by enrolling in
and Zeshan Tabani ndss.org postsecondary programs or taking classes that will help Enrichment Fund them gain employment, independent living skills, life skills, or others
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 82 General Resources for all Patients Education
School
American Disabilities Counseling, self-esteem classes, social skills training Act — Disability and classes
ada.gov Business Technical Assistant Center 1-800-949-4232
Parents of children can join (membership fees vary). Bi- Association on monthly newsletter Alert. Jobs postings, publications such
Higher Education ahead.org as How To Choose A College and Disability 704-947-7779 GED adult education, literacy classes, and job skills training
Avance Houston avancehouston.org
713-812-0033 This mobile app is provided through Easter Seals and helps to identify apps that are helpful to kids with special needs— particularly kids with Down syndrome.
One particularly interesting app is the Storybook Maker which allows users to write, illustrate and publish their Bridging Apps bridgingapps.org own storybook using text, photos, graphics and audio recordings. There are many uses for this app, but one we have found especially useful for children is a method for discussing upcoming changes in a schedule due to holidays or some other event that is out of the ordinary routine. Job placement services, resume writing, job counselors Career and Recovery careerand available
Resources recovery.org 713-754-7000
Scholarship, grants, loans The College Resource thecollegeresource
Center center.com 713-783-7575
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 83 General Resources for all Patients Education
GED classes, free service referral by Social Worker Community Family communityfamily
Center centers.org 713-923-2316 Information for parents of gifted or handicapped children, Council for ERIC clearinghouse
cec.sped.org Exceptional Children 888-232-7733 Social skills groups, educational testing. Accepts insurance and has a sliding scale for families with limited Depelchin Children’s
depelchin.org income Center
713-730-2335 A national civil rights law and policy center directed by Disability Rights individuals with disabilities and parents who have children
Education Defense dredf.org with disabilities. Also operate an information line. Fund 510-644-2555 Free services for persons with disabilities. Services are divided by region. Legal assistance to people with disabilities who are experiencing problems due to Disability Rights disabilityrightstx.or disability, enforcement of ADA requirements, special
Texas g education laws
1-800-252-9108 Regular school job skill training, GED classes, ages 16-21 Ed White Youth child care, teen group, sliding scale Center 281-474-2853
GED and job placement, financial aid for college and Employment and vocational programs.
etchouston.com Training Center 713-439-7530
Publications, fact sheets, posters and a resource directory Equal Employment for people with disabilities.
Opportunity eeoc.gov
Commission 1-800-669-4000
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 84 General Resources for all Patients Education
GED applications with a learning disability. Information on local GED classes, testing services and accommodations
GED Hotline gedtest.org guide
1-800-626-9433 Early Head Start program ages 0-3 and pre-k program. eclkc.ohs.acf.hhs.go Ages 3 and 4 only, must meet income guidelines Head Start
v/hslc 866-763-6481
Greater Houston Parents who are interested in home schooling their child.
Area Home g-hah.org Volunteer board, home school information available, Educators support groups, newsletter
Clearinghouse on post-secondary education for individuals with disabilities. Great resource. Puts out a Heath Resource publications for guidance counselors for working with
heath.gwu.edu Center students with disabilities
1-800-544-3284 All questions related to HISD.
HISD houstonisd.org 713-556-6005 If a child is not able to attend school due to illness, they can utilizes the homebound services program. The paperwork must be completed by school and physician; Homebound School houstonisd.org/ contact your social worker and she/he can help you set it
Services Domain/15044 up.
713-967-5285 Hopecam connects children undergoing treatment for cancer with their friends at school using tablet computers,
Hope Cam hopecam.org high speed internet connections and web cameras. Apply online. LDA has provided support to people with learning disabilities, their parents, teachers and other professionals Learning Disabilities with cutting edge information on learning disabilities,
Association of ldanatl.org practical solutions, and a comprehensive network of America resources.
412-341-1515
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 85 General Resources for all Patients Education
Maintains a database of professional service providers. Learning Disabilities
ldatx.org Provides advocacy, information and referrals, school Association of Texas programs. Diagnoses and evaluates developmental learning Meyer Center for texaschildrens.org/ disorders referral by doctor, nurse practitioner, or social Developmental departments/ worker. Pediatrics at Texas developmental-
Children’s Hospital pediatrics 832-822-3400 Information and referral service, educational programs, National Center for
ncld.org public outreach. Also provides a list of scholarships for Learning Disabilities students with learning disabilities. Professional teacher development, parent reference center, adult literacy classes — programs all related to Neuhaus Education
neuhaus.org reading success. Center
713-664-7676 Families with a child who has a disability often need information about the disability of their child, about early intervention (for babies and toddlers), school services (for Partners Resource
partnerstx.org school-aged children), therapy, local policies, Network transportation, and much more
281-969-5944
Speech, Language texaschildrens.org/ Neuro-psychological evaluation, social skills groups, and Learning Clinic departments/speec parenting classes referral by doctor, PNP, or social worker. at Texas Children’s h-language-and- Hospital learning 832-822-3700
Provides leadership, guidance and resources to help schools meet the educational needs of all students and Texas Education
tea.state.tx.us prepare them for success in the global economy. Agency
512-463-9734
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 86 General Resources for all Patients Education
Vocational Training
VOCATIONAL TRAINING HOUSTON AREA
Educational opportunities for individuals with Houston Community developmental and learning disabilities. Courses College Vocational offered include: Academic Skills, Career Vocational,
central.hccs.edu Advancement and Independent Living and Life Math Skills. Social Skills Training 713-718-6000 Provides information and referrals, peer support, and Houston Center for independent living skills training
hcil.cc Independent Living 713-974-4621 Provides services for persons with physical and mental Texas Department of disabilities. Programs include vocational rehabilitation, Assistance and transition planning, employment, and Independent
dars.state.tx.us Rehabilitation living Services 713-267-3470 twc.state.tx.us/jobs Texas Workforce eekers/career- Career guidance, school and college information for all Commission schools-colleges- students. students Provides resources and advocacy for those with developmental disabilities as well as for their families and caretakers. Offers information, referral services, parent support groups and training, mentoring
The Arc thearc.org programs, social programs, advocacy, etc. They also provide weekend activities and summer camps.
713-957-1600
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 87 General Resources for all Patients Education
VOCATIONAL TRAINING NATIONAL
For almost 100 years, the ACLU has worked to defend and preserve the individual rights and liberties American Civil guaranteed by the Constitution and laws of the United
aclu.org Liberties Union States.
212-549-2500 Brings survivors together and to help survivors deal with the social challenges that brain tumor survivor’s experience, including: career, employment, educational Children’s Brain
cbtf.org advocacy, cognitive challenges, health insurance Tumor Foundation problems and independent living issues.
866-228-4673
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 88 General Resources for all Patients End-of-Life
End-of-Life Texas Children’s Cancer and Hematology Centers offers an annual memorial service for families of children that were treated at Texas Children’s Hospital. 832-822-4564. Bereavement
Spanish Organization Website Speakin Service g Created to help other families with a critically or terminally ill child.
Abby’s Gift abbysgift.com No
281-731-0713 Brochures on hospice, what to ask, American Hospice americanhospice.org/worki etc. No
Foundation ng-through-grief 713-792-7184 Free grief support groups for children ages 3-18 and their families who have experienced the death of a child or
Bo’s Place bosplace.org Yes adult in their immediate family.
713-942-8339 Online support forums led by professional oncology social workers who offer support and guidance.
Cancercare cancercare.org Yes Groups are held for 15 weeks and registration is required.
877-969-0010 Assistance in creating everlasting memories to families with children in Clayton Dabney
claytondabney.org Yes the last stages of terminal cancer. Foundation
713-488-4096 Newsletter, information, support groups, resource catalog. Multiple Compassionate
compassionatefriends.org Yes locations. Friends
713-730-2335
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 89 General Resources for all Patients End-of-Life
Connects bereaved parents and family cbtf.org/connections/family members to bereaved mentors. Family 2 Family No
-2-family 713-467-7423
Bereavement services for parents, siblings, and loved ones are offered Houston Hospice
houstonhospice.org Yes through their Butterfly Program. Butterfly Program
713-526-8390 Offers individual and family Houston counseling on a sliding scale.
Galveston talkhgi.org Yes
Institute 713-944-6569
Provides financial assistance, Kyssi Andrews emotional support, grief counseling
Foundation for kyssiandrewsfoundation.org No and burial assistance. Pediatric Cancer [email protected]
Support group for parents who have Project Joy and lost a child.
joyandhope.org No Hope 713-944-6569
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 90 General Resources for all Patients End-of-Life
Hospice
HOSPICE EDUCATIONAL RESOURCES
Bereavement center. Offers publications and resources
Bo’s Place bosplace.org surrounding grief.
Children’s Hospice Educational resource on hospice care and kids. Some to
chionline.org International print and some to order for fee.
Compassionate compassionate Local self-help groups of bereaved parents and siblings
Friends friends.org offer mutual support. Free. Some publications
National Hospice and
Palliative Care caringinfo.org Information on hospice, grief and loss Organization
HOSPICE SUPPORT ORGANIZATIONS
Created to help other families with a critically or terminally ill child. Assists with financial and practical
Abby’s Gift abbysgift.com expenses surrounding a child on hospice.
281-731-0713 A program of the National Hospice and Palliative Care Organization that provides free resources to help people
Caring Connections caringinfo.org make decisions about end-of-life care and services.
1-800-658-8898 Central Texas Hospice services, bereavement counseling, and more. ctmc.org/care- Medical Center
services/hospice Hospice 713-677-7273
facebook.com/ Cherish The Photograph and video record beautiful moments of cherishthemoments Moments with Love someone suffering a terminal illness. withlove
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 91 General Resources for all Patients End-of-Life
Referral source, publications Children’s Hospice
chionline.org International 703-684-0330
Hospice Care for Orange, Chambers, Hardin, Galveston, compassion Newton, Jasper, Tyler, Polk, Liberty and San Jacinto Compassion Hospice
hospice.org 409-835-8357 Hospice enables patients to continue an alert, pain-free life and to manage symptoms so that their last days may Compassionate Care be spent with dignity and quality, surrounded by loved
cchnet.net Hospice ones.
866-535-3247 Group has nurses with pediatric background. Counties served: Montgomery, San Jacinto, Polk, Liberty, Trinity,
Crown Hospice crownhospice.com Walker, Waller, part of Harris.
361-575-5900 Counties served: Harrison, Cass, Marion, Morris, Rusk, Panola, Shelby, Nacogdoches, Gregg, Upshur, Smith, HeartsWay Hospice heartswayhospice.o Hopkins.
of Northeast Texas rg
903-295-1680 Home Care and The most comprehensive database of more than 33,000 agencylocator. Hospice Agency home care and hospice agencies. Use this resource to find
nahc.org Locator all the agencies in any particular area of the country.
Information about hospice services throughout the US Hospice Education
hospiceworld.org Institute 1-800-331-1620 Information on hospice services throughout the US
HospiceLink hospicelink.com 1-877-325-4032
Locations in Bryan, Brenham and La Grange. Hospice Brazos hospicebrazos
Valley valley.org 979-821-2266 (Bryan location)
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 92 General Resources for all Patients End-of-Life
Coping with terminal illness presents many challenges – physical, emotional, social and spiritual. The caring, experienced team of professionals at The Hospice of East hospiceofeast Texas is prepared to meet those challenges, and believes Hospice of East Texas
texas.org that no one, regardless of age, illness or financial circumstances, should have to face death alone or in pain.
903-266-3400 Inpatient facility or home care services hospiceinthepines.o Hospice of the Pines
rg 936-632-1514 Provides compassionate physical, social and spiritual support to individuals with a life-limiting diagnosis, and
Houston Hospice houstonhospice.org their loved ones, irrespective of their ethnicity or beliefs.
713-468-2441
operation Provides a winter wonderland to those children with Operation Snowdrop snowstorm.org cancer on hospice.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 93 General Resources for all Patients Fertility
Fertility
FERTILITY
texaschildrens.org/heal Preserving Fertility for Pediatric Oncology Patients. Texas Children’s th/fertility-after-cancer- Brochures in Spanish and English for boys and girls Hospital treatment fertility issues.
American Society Of Clinical Oncology
cancer.net Search “fertility” and it will bring up a guide Patient Guide on Fertility Preservation
Adoptive Families of Information and referral services to adoptive families.
adoptivefamilies.com America Publishes a magazine too.
American Association
aatb.org Information on sperm banking of Tissue Banks
American Cancer
cancer.org Information on sexuality issues and cancer Society
American Society of
Reproductive reproductivefacts.org Information on reproductive issues Medicine cancer.net/navigating- cancer- Cancer net care/children/preservin Preserving fertility in children with cancer g-fertility-children-
cancer
Genetics and In Vitro Information on ovary freezing and reproductive
givf.com Fertilization Institute issues
Kids Health kidshealth.org Publication on effects of cancer treatment on fertility
Free iPhone app that has fact sheets on fertility and hormonal health after cancer treatment, as well as ISaveFertility iPhone app provider pocket guides for fertility preservation options livestrong.org/ we-can-help/fertility- Livestrong Fertility assistance and information services/fertility-
women
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 94 General Resources for all Patients Fertility
mayoclinic.org/healthy- lifestyle/getting- pregnant/in- Mayo Clinic Fertility preservation options detailed depth/fertility- preservation/art-
20047512 myoncofertility.org/ articles/how_can_cance My Onco Fertility Fertility preservation information r_affect_my_childs_
fertility
Path 2 Parenthood path2parenthood.org Information on fertility and egg freezing, etc.
Resource for adult cancer patients and the parents of children with cancer who want to learn more about
Save My Fertility savemyfertility.org preserving their fertility before and during cancer treatment, and protecting their hormonal health after treatment.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 95 General Resources for all Patients Financial Matters
Financial Matters Financial Assistance
Many of these organizations require a social work referral. Speak with your social worker for more information about availability and specific requirements for each organization.
Financial assistance program for single parent Andre Sobel River
andreriveroflife.org families who have a child in medical crisis. Foundation Application required. Serves the educational and emotional needs of Assistance League of
assistanceleaguehou.org disadvantaged children and young adults, as well as Houston families in crisis in the greater Houston area. Provides food, clothing and shelter for people in
Catholic Charities catholiccharities.org need and a network of services supporting infants to seniors. Provides home and community-based services to people with related conditions as a cost-effective alternative to an intermediate care facility for Community Living dads.state.tx.us/services individuals with an intellectual disability or related Assistance and / conditions (ICF/IID). A related condition is a disability,
Support Services faqs-fact/class.html other than an intellectual disability, that originated before age 22 that affects the ability to function in daily life. Provides funding for children—both domestically First Hand and globally—who need assistance with clinical
firsthandfoundation.org Foundation necessities (such as surgery, medication and therapy), medical equipment and travel related to care.
joniandfriends.org/ Gia Nicole Angel help-and-resources/ Awards assistance through purchase of specific items Foundation organizations/gia- for children with physical disability foundation Provides small grants, information and support for HelpHopeLive helphopelive.org fundraising and patient awareness.
Individualized services and support to persons with Home and dads.state.tx.us/provider intellectual disabilities who are living with their Community Based
s/hcs family, in their own home or in other community Services settings, such as small group homes.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 96 General Resources for all Patients Financial Matters
Dedicated to improving the diagnosis, treatment and quality of life of persons with primary Immune Deficiency immunodeficiency diseases through advocacy,
primaryimmune.org Foundation education and research. This group has a patient advocate to help with insurance companies and getting them to pay, etc. A ministry of the Churches of Christ that places a
Lifeline Chaplaincy lifelinechaplaincy.org high emphasis on supportive care of members and community. Provides services to support families caring for children and young adults who are medically Medically Dependent dads.state.tx.us/provider dependent and to encourage de-institutionalization
Children Program s/MDCP of children in nursing facilities. Texas Department of Aging and Disability Services employees provide case management services At this time, only the Child Disability Report can be Social Security ssa.gov/disabilityssi/ completed online. Contact them by phone or in
Disability apply-child.html person to schedule an appointment to complete the SSI application.
Designed to help needy families achieve self- Temporary acf.hhs.gov/programs/of sufficiency. States receive block grants to design and Assistance for Needy a/ operate programs that accomplish one of the
Families programs/tanf purposes of the TANF program.
Provides federal grants to states for supplemental Special Supplemental foods, health care referrals, and nutrition education fns.usda.gov/wic/wome Nutrition Program for low-income pregnant, breastfeeding, and non- n-infants-and-children- for Women, Infants, breastfeeding postpartum women, and to infants and
wic and Children children up to age five who are found to be at nutritional risk.
GRANTS
Oncology 832-822-3483 Financial Counselors
at Texas Children’s BMT 832-826-5527 Cancer and
Hematology Centers Hematology 832-822-1430
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 97 General Resources for all Patients Financial Matters
Aubrey Rose
aubreyrose.org Assists families with medical expenses. Foundation Assists families who don’t qualify for conventional types of social or charitable assistance, and who are
Modest Needs modestneeds.org facing a financial crisis because they’ve encountered a single, unexpected expense they just can’t afford on their own.
Maggie Welby
maggiewelby.org Provides grants to families in need Foundation
Provides medical grants to help children gain access to health-related services not covered, or not fully United Healthcare covered, by their parents’ commercial health Children’s uhccf.org insurance plan. Families can receive up to $5,000 Foundation annually per child ($10,000 lifetime maximum per child). See your social worker for assistance with application
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 98 General Resources for all Patients Financial Matters
Insurance
Insurance information, publications on insurance and American Cancer cancer
cancer.org Society 713-266-2877
Helps parents and childhood cancer survivors exercise American Childhood their rights under the law.
acco.org Cancer Organization 855-858-2226
Information about insurance questions American Council of
acli.com Life Insurance 202-624-2000
American Family Life Offers ways to buy supplemental health insurance.
Assurance Council aflac.com (AFLAC) 1-800-992-3522 Insurance industry trade association that will provide American Health information on insurance and health care issues
ahip.org Insurance Plans 202-778-3200
Centers for Medicare Information on Medicaid programs and benefits
and Medicaid cms.gov Services 877-267-2323
Department of Hotline for complaints about Medicaid. Provides Health and Human assistance with issues of entitlements, benefits, insurance, oig.hhs.gov/fraud/ Services Hotline for and community resources.
report-fraud the Office of the Inspector General 1-800-447-8477 Attorney advises persons on legal rights and possibly other legal resources available Family Law Hotline
1-800-777-FAIR
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 99 General Resources for all Patients Financial Matters
Helps families work with insurance companies on paying Medical Care for necessary treatment including hematology, phase I,
Management mcmcllc.com BMT, etc. Corporation 1-800-227-1464 Offers help with situations in which you feel you or your National Association family are not being treated fairly by your insurance
of Insurance naic.org carrier. Commissioners 816-842-3600 canceradvocacy.org National Coalition / Information on health care for cancer survivors for Cancer resources/health- 301-650-8868 Survivorship
insurance Provides legal consulting and referral service for patients confronting denial of insurance coverage, or need for National Patient negotiating support for public assistance through both
npaf.org Advocate Foundation state and federal agencies.
202-347-8009 PAN has provided nearly one million underinsured patients with over $2.6 billion in financial assistance through over 60 disease-specific programs, hemophilia being the newest. Patients who qualify for their Hemophilia Premium Assistance Program are eligible to receive $4,500 per year Patient Access in financial assistance. Eligible patients need to be Network (PAN) panfoundation.org residing and receiving treatment in the U.S., and have Foundation health insurance. Several informative publications are available to download, including Nose Bleeds, The Child With A Bleeding Disorder: Guidelines For Finding Childcare, Family Emergency Kit Checklist, and more.
1-866-316-7263 Provides benefits to persons who can’t work. Eligibility for social security benefits often means you may qualify for Social Security
ssa.gov other programs or benefits. Administration
1-800-772-1213
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 100 General Resources for all Patients Financial Matters
Call for details about insurance for anyone Texas Dept. of
tdi.texas.gov Insurance - Risk Pool 1-800-252-3439
hba.org/services/ Assistance with legal rights/ insurance issues Houston Volunteer houston-volunteer- Lawyers
lawyers 713-228-0732 Helps you figure out a plan for insurance. They underwrite wealthmark individual policies and temporary insurance, if needed. WealthMark Advisors
advisors.com 1-800-274-2844
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 101 General Resources for all Patients Financial Matters
Medical Equipment Assistance
Provides medical equipment such as ramps, special beds The Arya Foundation
aryafoundation.org and walking aides.
Building Blocks for Provides grants/funding for therapy, hearing and bb4k.org Kids communication, medical equipment, and more Provides opportunities and support to people with physical challenges, so they can pursue active lifestyles Challenged Athletes challenged through physical fitness and competitive athletics. CAF
Foundation athletes.org believes that involvement in sports at any level increases self-esteem, encourages independence and enhances quality of life Collects used wheelchairs and repairs and distributes Chariots of Hope chariotsofhope.org them with no cost to recipient.
Any child, age 15 or under, suffering from a life Cody’s Wheels of cwoh.org threatening illness is eligible for a bike, scooter, trike etc. Hope Application on website. Helps families gain access to therapies, equipment and Danielle’s danielles other benefits for children with cerebral palsy or brain
Foundation foundation.org Injuries. Different Needz differentneedz Grants for medical equipment awarded once a year.
Foundation foundation.org
First Hand firsthand Provides financial assistance for medical care, vehicle
Foundation foundation.org modification and travel
Assists with medical and mobility equipment and
Friends of Man friendsofman.org prosthesis
Gia Nicole Angel
giafoundation.com Assists with the purchase of medical equipment Foundation
McLindon Family mclindonfamily Provides special needs children with adaptive bikes Foundation foundation.org
Provides equipment and services to improve quality of life MY GYM Challenged challenged of children coping with chronic illness and/or are America america.com physically or developmentally challenged
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 102 General Resources for all Patients Financial Matters
Refurbishes mobility devices and assists families with
Project Mend projectmend.org medical equipment needs.
Connects those in need of a wheelchair ramp with the Ramps.org ramps.org necessary suppliers and installers Raise funds for medical equipment, travel expenses, and Ride to Give ridetogive.com other out of pocket costs related to having a medically fragile child Provides buggies to children with disabilities to ensure Stepping Stones for steppingstonesfor they and their families experience joy and freedom of Stella stella.org being outdoors
Grants provide financial assistance for families with children that have medical needs not covered or not fully United Health Care covered by their commercial health insurance plan. They
Children’s uhccf.org aim to fill the gap between what medical services/items a Foundation child needs and what their commercial health benefit plan will pay for. 16 years old and younger.
Variety — The Provides equipment and services for mobility,
usvariety.org Children’s Charity independence and social inclusion
Provides custom wheelchairs, widens doors, builds ramps wheelchairs4kids.or Wheelchairs For Kids and provides wheelchair lifts and carriers for vehicles.
g Other services include standers and gait trainers. Helps children with disabilities, 20 years and Wheel To Walk
wheeltowalk.com younger, obtain medical equipment or services not Foundation provided by insurance.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 103 General Resources for all Patients Financial Matters
Medication Assistance
amgen.com/respon sibility/access-to- medicine/reimburse A variety of patient assistance programs. Amgen makes ment-support- Amgen the drugs Aranesp, Neulasta, Neupogen, Nplate and services-and- Epogen. financial- assistance- programs A patient assistance program that provides bridgestoaccess.co Bridges To Access GlaxoSmithKline prescription medicines to qualified
m patients who need help paying for treatment. The Community Assistance Program (CAP) prescription discount card saves cardholders an average 15% on brand name medications and 55% on generic medications. The cards are accepted at over 80% of Community
caprxprogram.org pharmacies in the US and its territories, including Puerto Assistance Program Rico. Anyone may use the card, regardless of age or income.
888-311-6224
Prescription drug savings. Compare prices, print free
goodrx.com Good Rx coupons and save money.
Specialist that can help to investigate benefits and verify patient coverage; provide information on reimbursement
Jump Start Program erwinaze.com process and connect patients with financial assistance
888-837-4397
Assists patients living with chronic and life-altering Health Well healthwell illnesses in paying prescription drug copayments,
Foundation foundation.org deductibles, and health insurance premiums.
Services include: an online support network for parents of children with cancer, educational materials, and financial National Children’s
thenccs.org assistance for treatment-related expenses. Printable Cancer Society publications. They partner with Agility, a national provider of discount prescription drug cards.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 104 General Resources for all Patients Financial Matters
Information about patient assistance programs which
NeedyMeds, Inc. needymeds.org provide no cost prescriptions to eligible participants
Financial assistance to qualified patients, with prescription drug co-payments their insurance requires relative to Patient Advocate Co-
copays.org their diagnosis. Call counselors work directly with the Pay Relief patient and physician to obtain medical, insurance and income information to expedite the process. Helps chronically ill patients locate health insurance, subsidize the cost of health insurance premiums, obtain patientservicesinc.o Patient Services, Inc. pharmacy and treatment co-payment assistance, assisting
rg with Medicare Part D Co-insurance, and advocacy for Social Security Disability. Partnership for Single point of access to more than 275 patient assistance Prescription pparx.org programs, including more than 150 offered by Assistance pharmaceutical companies. Reimbursement solutions, verification, and payment HELPline. Program to help both insured and uninsured pfizerhelpful patients access Pfizer medicines (including Pfizer RSVP answers.com Rapamune/Sirolimus).
888-773-0121 Pharmaceutical Offers a single point of contact to access more than 475 Research and public and private prescription assistance programs.
pparx.org Manufacturers of America 888-477-2669 Search engine for patient assistance programs that offer RxAssist Volunteers free medication to patients in financial need; rxassist.org in Health Care downloadable information packet describing options for assistance. Helping hand to people in need of obtaining critical
rxhope.com RxHope medications that they are unable to afford.
A non-profit pharmacy whose mission is to provide RxOutreach rxoutreach.com affordable medications. Prescription drug saving program; a discount card for numerous participating pharmacies providing savings
ScriptSave scriptsave.com through membership to individuals without consideration of income.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 105 General Resources for all Patients Financial Matters
safetynet Program to held with drug reimbursement for Amgen Safety Net
foundation.com medicines (Neulasta and others)
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 106 General Resources for all Patients Hearing
Hearing American Society for Provides education and online support for parents
deafchildren.org Deaf Children and families of deaf children.
Awards iPads and protective cases to kids for aid in
Apraxia Kids apraxia-kids.org communication.
The Center for centerhearingand Birth to 18 years who have speech and language
Hearing and Speech speech.org delays relating to hearing impairment.
First Hand Provides financial assistance for some treatments,
firsthandfoundation.org Foundation equipment, and vehicle modifications
Retail provider of hearing aids, hearing aid repairs
Hearing Aid Express hearingaidexpress.com and batteries. Multiple locations.
Hike Fund thehikefund.org Provides hearing devices for children in need.
Miracle Ear
miracle-ear.com Provides hearing aides to those in need. Foundation Works to protect the civil rights of deaf individuals. National Association Provides an information center and the answers to
nad.org of the Deaf many questions regarding rights of the deaf in the work force.
Self Help for Hard of Provides links, education and advocacy for the hard
hearingloss.org Hearing People, Inc. of hearing.
Audiology Center at texaschildrens.org/ Identifies, evaluates and provides habilitation of Texas Children’s
departments/audiology hearing impairment in children. Hospital Texas Department of Assistive and Links to programs and resource information for the Rehabilitative dars.state.tx.us deaf and hard of hearing in Texas. Services- Deaf and Hard of Hearing Provides education for children with hearing loss. Texas School for the
tsd.state.tx.us Also provides residential facilities for school aged Deaf children.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 107 General Resources for all Patients Hearing
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 108 General Resources for all Patients Hotels and Housing
Hotels and Housing
HOTELS Ask for the medical rate!
Apartment style hotel with shuttle service
Aishel House aishelhouse.org 713-522-2004 A few rooms have kitchen, no shuttle americasbestvaluei Americas Best Value nn.com/hotel- Inn Medical Center photos.cfm?idp=16 Downtown 2419 Riverside Dr. 281-974-4432 72 Houston, TX 77004 Hotel, no shuttle, no kitchen
Astro Best Motor Inn astrobestinn.com 9430 S. Main St. 713-668-0691 Houston, TX 77025 Apartments, shuttle to medical center; kitchen. Braeswood Park
braeswoodpark.org Condiminiums 2255 Braeswood Blvd. 713-797-0662 Houston, TX 77030 Hotel with microwave and refrigerator choicehotels.com/ Econo Lodge Medical texas/houston/ Center 7905 S. Main St. 713-667-8200
econo-lodge-hotels Houston, TX 77025
Doubletree by Hilton Hotel with kitchen, shuttle service Hotel & Suites doubletreesuites
Houston By the houston.com 5353 Westheimer Rd. 713-961-9000 Galleria Houston, TX 77056 hamptoninn3.hilton .com/en/hotels/tex Hampton Inn & Hotel with kitchen and shuttle service as/hampton-inn- Suites Houston and-suites- Medical 1715 Old Spanish Tr. 713-797-0040 houston-medical- Center/Reliant Houston, TX 77054 ctr-reliant-park-
HOUMDHX/
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 109 General Resources for all Patients Hotels and Housing
ihg.com/holidayinn / Hotel with no kitchen. Provides shuttle service to medical hotels/us/en/houst center. Holiday Inn on/houad/hoteldet NRG Arena ail?cm_mmc=Googl 8111 Kirby Dr. 713-790-1900 eMaps-_-HI-_-USA- Houston, TX 77054
_-HOUAD Extended Stay extendedstayameric Hotel with kitchen and shuttle service America - Houston a.com/hotels/tx/ho Medical Center - uston/med-ctr- 7979 Fannin St. 713-797-0000
NRG Park - Fannin reliant-pk-fannin-st Houston, TX 77054 Hotel with no kitchen. Provides shuttle service to medical center. Hilton Houston
hilton.com Plaza/Medical Center 6633 Travis St. 713-313-4000 Houston, TX 77030 ihg.com/crownepla Hotel with no kitchen. Provides shuttle service to medical za/hotels/us/en/ho Crown Plaza Houston center. uston/houcp/hotel Near Reliant - detail?cm_mmc=Go Medical 8686 Kirby Dr. 713-748-3221 ogleMaps-_-CP-_- Houston, TX 77054
USA-_-HOUCP choicehotels.com/t Hotel with kitchen and shuttle service Mainstay Suites exas/houston/main
Texas Medical stay- 3134 Old Spanish Tr. 832-201-3131 Center/Reliant Park hotels/tx933?sourc Houston, TX 77054
e=gyxt marriott.com/hotels Hotel with kitchen and shuttle service / Courtyard Houston - travel/houbs- West University 2929 Westpark Dr. 713-576-3767 courtyard-houston- Houston, TX 77005
west-university/ marriott.com/hotels / travel/houmc- Hotel with kitchen and shuttle service Houston Marriott houston-marriott- Medical Center medical- 6580 Fannin St. 713-796-0080 center/?scid=bb1a1 Houston, TX 77030 89a-fec3-4d19-
a255-54ba596febe2
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 110 General Resources for all Patients Hotels and Housing
lexingtonhotels.co Hotel with kitchen and shuttle service Lexington Hotel – m/property.cfm?idp Houston Medical =22021&rcode=si 1025 Swanson St. 713-790-1617 Center
m2016 Houston, TX 77030
marriott.com/hotels Hotel with kitchen and shuttle service Spring Hill Suites /travel/hourp- Houston Medical springhill-suites- Center/NRG Park houston-medical- 1400 Old Spanish Tr. 713-796-1000
center-nrg-park/ Houston, TX 77054
choicehotels.com/ Shuttle service; contract with Medicaid texas/houston/quali Quality Inn & Suites ty-inn- NRG Park 2364 South Loop W. 713-799-2436 hotels/txc23?source Houston, TX 77054
=gyxt Hotel with kitchen and shuttle service marriott.com/hotels
Residence Inn /travel/houas- 7710 S. Main St. 713-660-7993 Houston Medical residence-inn- Houston, TX 77030 Center/NRG Park houston-medical-
center-nrg-park/ Contract with Texas Children’s marriott.com/hotels Hotel with kitchen and shuttle service Residence Inn /travel/houbf-
Houston West residence-inn- 2939 Westpark Dr. 713- 576-3767 University houston-west- Houston, TX 77005 university/ marriott.com/hotels Hotel with kitchen and shuttle service Spring Hill Suites /travel/hourp-
Houston Medical springhill-suites- 1400 Old Spanish Tr. 713-796-1000 Center/NRG Park houston-medical- Houston, TX 77054 center-nrg-park/ Hotel with shuttle service, no kitchen Wyndham Houston wyndhamhouston
Medical Center medcenter.com 6800 Main St. 713-528-7744 Houston, TX 77030
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 111 General Resources for all Patients Hotels and Housing
Hotel with kitchen and shuttle service Rodeway Inn & rodewaysuites
Suites houston.com 6712 Morningside 713-663-6200 Houston, TX 77030
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 112 General Resources for all Patients Hotels and Housing
HOUSING GENERAL HOUSING
cancer.org/treatme Free hotel lodging for 4 nights/15 nights per year. Needs American Cancer nt/supportprogram 2-3 weeks notice. Some restrictions may apply. Society sservices/patientlod
ging 1-800-227-2345 Affordable home ownership initiative, refugee Catholic Charities Of resettlement, transitional housing for women and their
the Archdiocese of catholiccharities.org children. Some restrictions may apply. Galveston-Houston 713-227-9981 Low cost housing. Applications online, waiting list. Baytown Housing baytownhousing.or
Authority g 281-427-6686 Shelter place, food, clothing
Casa Juan Diego cjd.org 713-869-7376 Daily rate: $35. Refundable $100 deposit. 8 days- faithhouse 4months Faith House
houston.org 713-664-3048 Families with child undergoing leukemia or lymphoma treatment may apply to stay at an apartment through this foundation. Speak with social work about getting on the Halo House halohouse waiting list. They are currently fundraising however, they Foundation foundation.org have apartments that are available for luekemia/lymphoma and myeloma families. Their wait list can be long, per social work so typically they have been encouraging them to get on the wait list early. Free housing for 3 months. Some restrictions may apply. Apartments have a max of 4 people. Children under 18 cannot stay unless they are the patient as we do not have hospitality facilities for children. We have about a three month Hospitality Apts.
apartments.org waiting list time. We have a three month maximum stay. Check out joeshouse.org for listing of possibilities, choose TX and then Houston metro.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 113 General Resources for all Patients Hotels and Housing
713-790-9120
Public housing. Se habla español. Houston Housing housingfor
Authority houston.com 713-260-0600 Apartments and houses for low-income persons. Some portal.hud.gov/hud Housing and Urban restrictions may apply. portal/HUD?src=/st Development (HUD)
ates/texas 713-718-3199 Provides free or significantly reduced cost lodging to patient and families while receiving medical care away Healthcare
hhnetwork.org from home. Some restrictions may apply. Hospitality Network
1-800-542-9730 Online directory of place to stay that are near hospitals and cancer treatment center and offer discounts to family members and caregivers. The site is designed for patients/families to search the list of lodging options and Joe’s House joeshouse.org find the best lodging solution for their situation.
877-563-7468
Low cost housing, Section 8 housing. Some restrictions may apply.
Pasadena Housing ci.pasadena.tx.us
713-475-5544 Housing for families and patients. Some restrictions may Reside (away from apply.
residehouston.com home) 713-791-9454 Housing for families and patients. Some restrictions may Ronald McDonald apply.
rmhc.org House 713-795-3500
CHURCH APARTMENTS
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 114 General Resources for all Patients Hotels and Housing
Medical diagnosis. Call to put name on waiting list for all church apartments. Families treated in the Texas Medical Center. 2 week minimum. $39 a night and the non-profit pays for utilities, TV, internet etc. Most have 1 bedroom, 5 have 2 bedroom. Siblings are allowed. No pets. Waitlist is usually not bad. Some families need immediate assistance, some not until months out. Family should complete application or call. There is a secretary who Church Apartment churchapartment speaks Spanish at the “2640” number.
Ministry ministry.org First Methodist Church, Kingwood Church of Christ 713-524-2640
South Main Baptist 713-529-4167
Serenity House 713-874-6663
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 115 General Resources for all Patients Lesbian, Gay, Bisexual, Transgender and Questioning
Lesbian, Gay, Bisexual, Transgender and Questioning
LESBIAN, GAY, BISEXUAL, TRANSGENDER AND QUESTIONING
Provides crisis intervention for and suicide thetrevorproject.or prevention for LGBTQ youth. They have many The Trevor Project
g educational resources and an online curriculum for teachers. Serves gay, lesbian, bisexual, transgender and questioning people by providing free and GLBT National Help
glbthotline.org confidential peer-support and local resources. Center
888-THE GLNH Houston area support and social group for LGBTQ teens ages 13-20. Meets at the Montrose Center several nights each week. Provides an affirming HATCH Youth hatchyouth.org environment with role models and peer support activities, education on health issues, and community outreach on issues affecting LGBTQ youth. Specializes in sexual identity issues. Spanish speaking available. They offer discounted rates based on financial need. Also offers numerous Montrose Center montrosecenter.org support groups.
713-529-0037 A group for parents and families who are dealing with a child or loved one that is coming out. Dedicated to supporting families by keeping them in loving relationships. Confidential small group discussions are led by a trained facilitator. Group members are encouraged to share stories pflag.org regarding their loved ones, thereby creating an PFLAG atmosphere of understanding and support. A small pflaghouston.org group is dedicated exclusively to transgender issues. PFLAG Houston also maintains a confidential voice mail helpline staffed by caring PFLAG parents who take turns returning phone calls.
713-46PFLAG
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 116 General Resources for all Patients Lesbian, Gay, Bisexual, Transgender and Questioning
This line is primarily for transgender people experiencing a crisis. This includes those who may be struggling with their gender identity and are not
Trans Lifeline translifeline.org sure that they are transgender
877-565-8860
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 117 General Resources for all Patients Palliative Care
Palliative Care
PALLIATIVE CARE
Education, support, respite care and advocacy for Caregiver Action
caregiveraction.org caregivers. Toll free information line provides referrals to Network caregiver support groups and a caregiver resource guide.
Provides education, support and guidance for family and professional caregivers. They produce Today’s Caregiver magazine, the first national magazine dedicated to Caregiver Survival
caregiver.com caregivers, the "Fearless Caregiver Conferences", and a Resources website, which includes topic-specific newsletters, online discussion lists, back issue articles of the magazine, chat rooms and an online store. Provides hope, comfort, and support to families experiencing the death of a child, sibling, or grandchild Compassionate compassionatefrien and helps others better assist the grieving family. Offers
Friends ds.org brochures, sibling chats, cyber friends, and pen pals to people suffering the loss of a child.
Online community for end of life care. Offering resources to improve the quality of compassionate care for people
Growth House growthhouse.org who are dying. Links to home care, pain management, quality of life issues and grief.
Website provides information and resources to help with
Cure Search curesearch.org end of life grief. Resources about end of life, recent death, and months or years after death.
NHPCO is committed to improving access to hospice and National Hospice and palliative care for children and their families—both
Palliative Care nhpco.org/pediatric nationally and internationally. Brochures for family and Organization more. ninr.nih.gov/newsa A fact sheet, a resource card to help families find support, ndinformation/conv National Institute of and a series of family stories. The materials are available ersationsmatter/co Nursing Research in English and Spanish. NINR is part of the National nversationsmatter- Institutes of Health.
patients
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 118 General Resources for all Patients Palliative Care
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 119 General Resources for all Patients Parking and Transportation
Parking and Transportation Parking
texaschildrens.org/ Parking at Texas maps-and- Pricing and location of all medical center parking areas. Children’s Hospital
directions/parking
biglovecancer Provides parking vouchers to oncology families. This Big Love Cancer Care
care.org service is based on need and provided as funds allow.
Provides parking vouchers to oncology families. This service is based on need and provided as funds allow.
Candlelighters candle.org
713-270-4700
Provides assistance paying for parking in the medical Emma’s Hugs emmashugs.com center. Referral must be made by social worker, nurse or family friend.
For families with a child who has leukemia. They will lls.org/texas-gulf- Leukemia Society reimburse for outpatient parking (need to fill out an
coast application)
6800 Main, next to Tides II $5.00 per day. Allright Parking Not applicable
713-651-7810
txdmv.gov/motorist Texas Department of Provides handicap stickers for parking. Must fill out s/disabled-parking- Motor Vehicles application and have physician sign.
placards-plates
Support child with cancer and their families with We’ll Get This wellgetthis.org transportation costs and other challenges
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 120 General Resources for all Patients Parking and Transportation
Transportation to the Medical Center
texaschildrens.org/ Kangaroo Crew brings critically ill babies and children to Texas Children’s departments/ Texas Children's Hospital from all over the nation and Kangaroo Crew
kangaroo-crew Central America for expert care.
Provides free transportation to and from the Medical Center. Se habla Española. Dependent on volunteer redcross.org/local/t American Red Cross availability.
exas/gulf-coast
713-526-8300 Provides transportation within Pasadena and to and from the Medical Center, se habla Español. Operates within Pasadena - 8:00 am - 2:00 pm Mon-Fri, to American Red Cross redcross.org/local/t Medical Center 8:00 am - 1:00 pm Tues and Thur. (arrive
— Pasadena exas/gulf-coast between 9:00-9:30 am and ready to pick-up @ 1:00 pm)
713-943-7000 Provides non-emergency, long-distance ground transportation to financially disadvantaged, ambulatory patients who are traveling for treatment. A typical trip supported by Angel Wheels does not exceed 300 miles (one-way), and they do not normally handle trips within a local area or community. Exceptions are made on a Angel Wheels to case-by-case basis, routinely for cancer patients angelwheels.org Healing traveling daily for treatment. They utilize the following resources for assisting patients: Gas cards (provided to off-set fuel costs for patients) Bus Tickets (Greyhound, Trailways, etc.) Train Tickets (Amtrak)
Schedules and pays for travel arrangements to the hospital where the child is being treated for cancer. Compass to Care compasstocare.org Child must be under 18, on active treatment, demonstrate financial need, live in and be traveling within the US.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 121 General Resources for all Patients Parking and Transportation
Provides financial assistance to cancer patients and their families when traveling long distances to doctors and Grind for Life grindforlife.org hospitals. Those who qualify may request assistance for travel and lodging expenses, meals, and personal needs.
Houston Public Transportation
METRO ridemetro.org 713-635-4000
METROLift provides transportation for persons with ridemetro.org/Page disabilities who cannot board, ride or disembark from a METROLift
s/MLEligibility.aspx METRO fixed-route bus, even if that bus is equipped with a wheelchair lift or ramp.
Provides transportation for families who need assistance to and from medical appointments. We’ll Get This wellgetthis.org
713-817-0328
Provides transportation to and from treatment for those Your Ride is Here yourrideishere.org fighting cancer. No charge.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 122 General Resources for all Patients Parking and Transportation
Air Transportation
Mission is to ensure that no financially stressed patient is denied access to care for lack of long-distance, Air Care Alliance medically-related transportation. Some restrictions may
Mercy Medical aircarealliance.org apply. Angels
888-675-1405 Provides access for people in need who seek free flights to specialized health care facilities due to crisis. Serves all 50 states. Volunteer pilots utilize their own aircharity aircraft, fuel and time to provide free flights to medical Air Charity Network network facilities for financially distressed citizens or otherwise
.org unable to use public transportation. Also coordinates flights for organ transplant candidates, clinical trial participants, chemotherapy or other repetitive treatment. Some restrictions may apply. Provides air transportation for fee. Some insurance will pay. No Medicaid accepted. Some restrictions may aeronationalinc.co Aero National apply.
m
1-800-245-9987 Provides worldwide support to children, families, and organizations dedicated to improving the quality of life for children with medical, educational or social services hub.aapubs.com/en needs. Application takes 2 weeks to review, several American Airlines: /ju/american- criteria - consult social worker. Email Kids in Need airlines-kids-in- [email protected] to set up a flight. Some
need restrictions may apply.
817-963-8118 Facilitates no-cost or reduced rate commercial airline tickets for needy cancer patients and their families. AACP encourages patient transport referrals through Angel Airlines for the National Patient Travel Center. Cancer Patients angelairlines
(a.k.a. Angel Airline forcancerpatients.or They use commercial airlines to provide charitable Samaritans, Mercy g cancer patient travel. AACP does not duplicate any of Medical Angels) the efforts of any other charity.
1-800-296-1217
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 123 General Resources for all Patients Parking and Transportation
Arranges travel through a network of volunteer pilots for people who require specialized medical treatment not available to them locally. Social worker must assist
Angel Flight, Inc. angelflightsc.org as there is an application with medical signature needed. Some restrictions may apply.
972-458-0700 Free air transportation to and from medical facilities for Children’s Flight Of childrensflightof children who—due to medical, financial or logistical
Hope hope.org reasons—are not able to travel to treatment any other way. Some restrictions may apply. The only charitable organization in the United States Corporate Angel corpangel whose mission is to help cancer patients access the best
Network network.org possible treatment by arranging free travel using empty seats on corporate jets. Some restrictions may apply. Provides air transport to patients and families. Uses Critical Care
ccmedflight.com state-of-the-art medical equipment and works with Medflight insurance carriers. Some restrictions may apply. They fly people in need of distant medical treatments who are geographically isolated from airline travel or Freedom Flight freedomflightusa.co financially depleted due to illness. Some restrictions
Charitable m may apply.
940-242-3838 The volunteer pilots are FAA certified pilots. Passengers must have financial need, be able to sit upright, be ambulatory and be willing to fly in a small, unpressurized aircraft. No limit on the number of times
Lifeline Pilots lifelinepilots.org a passenger can utilize the service. Some restrictions may apply.
1-800-822-7972 Provides free flights to distant specialized care and valuable second opinions. Some restrictions may apply.
Miracle Flights miracleflights.org
1-800-359-1711
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 124 General Resources for all Patients Parking and Transportation
Provides information about all forms of charitable, long- distance medically-related transportation and provides referrals to sources of help available in the national National Patient Air charitable medical transportation network. Health care
Transport Helpline - patienttravel.org professional or family can call. Some restrictions may Air Care Alliance apply.
1-800-296-1217
Operation Liftoff provides air transportation for children Operation Liftoff operationliftoff.com with a life threatening illness for a treatment trip.
Provides flights to people in need who must travel to Volunteer Pilots receive necessary medical treatment. Check criteria for
volunteerpilots.org Association patients prior to requesting a flight. Some restrictions may apply.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 125 General Resources for all Patients Parking and Transportation
Medicaid Transportation
Sets up non-emergency rides for people who have no other way to get to their Medicaid health-care visits. This includes people with Medicaid, children who get services through the Children with Special Health Care Needs program, and people in the Transportation of Indigent Cancer Patients program. The program does not set up rides in an ambulance, even for non-emergency purposes, but the program can pay back (reimburse) someone who uses their personal car to drive a Medicaid member to and from their Medicaid-related health visit.
855-687-4786 (Houston/Beaumont) Texas Medicaid and hhsc.state.tx.us/ 855-687-3255 (Dallas)
Chip Transportation medicaid/mtp/ 877-MED-TRIP (all other areas)
How to set up: 1. Call at least 2 work days or more before you need a ride 2. Call at least 5 days in advance for out of town travel 3. Have the following items when you call: - Medicaid ID number - Name, address of where you will be picked up - Name, address, phone number of where you need to go If your child has special needs (wheelchair), please explain this so they can send the correct vehicle. Out Of Town Medicaid helps with gas reimbursement and food Assistance assistance in some cases
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 126 General Resources for all Patients Social Support
Social Support
SOCIAL SUPPORT
Free superhero cape for any child with disability or life
Capes 4 Heroes capes4heroes.com threatening illness
Personal, protected websites for patients and caregivers
Caring Bridge caringbridge.org to stay connected. Chai Lifeline is an international non-profit organization dedicated to meeting the non-medical needs of seriously ill children, their families and communities. Their mission
Chai Lifeline chailifeline.org is to enhance lives through programs and services that offer friendship, good times, great memories, and social and emotional support. Texas is considered to be in the Southeast area.
Courageous Parent courageousparent A safe space for parents caring for seriously ill children. It Network network.org has a blog, news, guides and testimonials.
Resources, tips, brochures and a newsletter that
Family Voices familyvoices.org advocates children’s health care needs. Comprised of volunteers connect seriously ill and hospitalized children with celebrities through phone calls famousfone and customized videos. Hospitals refer patients, Famous Fone Friends
friends.org indicating specific requests or interests, and FFF then coordinates the phone call from the requested celebrity list to the child. This group specializes in making a free hospital gown for specific children. Each gown is made from fabric that interests the child and we even go one step further and
Gracie’s Gowns graciesgowns.org embroider their first name or nickname onto the gown as well. Must be under age 18 and treated for a chronic or life threatening illness.
hugginzbyangel.co A hand-sewn blanket is made for any child who is battling Hugginz By Angel
m medical fragile. Parent must nominate child.
Provides custom celebration cakes to families impacted
Icing Smiles icingsmiles.org by the critical illness of a child. Can be for the ill child, or the sibling.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 127 General Resources for all Patients Social Support
MyMusicRx.org reaches thousands of kids and teens in pediatric hospitals across the country with topical music content that makes a difference. Medical research shows
My Music Rx mymusicrx.org music can play a powerful role in their daily experience, with measurable benefits that are social, emotional, and physiological. You can play games, learn how to play instruments, listen to concerts and more. Project Joy and Hope strives to prevent and relieve Project Joy and Hope suffering for children with life-limiting conditions and Joyandhope.org for Texas their families through community awareness, education, and special supportive care services and programs. Works at improving quality of life for children facing life threatening and chronic illnesses through the power of Team Impact goteamimpact.org team. They do this by drafting courageous kids with a local college athletic team. TxP2P empowers families to be strong advocates through Texas Parent to txp2p.org parent-to-parent support, resource referral, and Parent education Will send children suffering from illness, disease, a Wishers and wishersand disabling condition or fighting medical challenges a
Dreamers dreamers.org hospital gown for their doll, bear or little buddy.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 128 General Resources for all Patients Vision
Vision
VISION EDUCATION ORGANIZATIONS
American Association Provides doctor search, information about childhood eye for Pediatric aapos.org disorders and additional information. Available in Spanish Ophthalmology and and Chinese. Strabismus Information about the diagnosis and treatment of ocular
Eye Cancer Network eyecancer.com tumors, eye cancer, and orbital diseases for patients, their families, and the health professionals who care for them.
VISION * indicates scholarship SUPPORT ORGANIZATIONS AND SCHOLARSHIPS available
Membership organization, information and referral, advocacy, specific college scholarships, job listings on the web site, monthly magazine.
American Council of
acb.org Annually awards approximately 20 scholarships ranging in the Blind* amounts from $1,000 to $4,000 to vocational, entering freshmen, undergraduate and graduate college students who are legally blind, maintain a 3.3 GPA and are involved in their school/local community. Information requests, publications, talking books and American Foundation other materials, disability specific scholarships.
afb.org for the Blind* Scholarships for blind students pursuing a college degree.
Creates educational, workplace and lifestyle products and American Printing
aph.org services for blind catalogs at no cost in print and on House for the Blind cassette. Association for Education and Rehab
aerbvi.org Disability specific scholarships, information and referral. of the Blind and Visually Impaired
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 129 General Resources for all Patients Vision
Association on Newsletter, bibliography of resources, employment
Higher Education ahead.org exchange, journal. and Disability
Vision Council of Information on general eye care and specific eye diseases
thevisioncouncil.org America and conditions.
Blind Children’s blindchildrens Infant-preschool level services in Los Angeles, CA,
Center center.org publications for teachers/parents.
Blinded Veterans
bva.org Disability-specific scholarships Association
Information and referral, youth and adult programs,
Braille Institute brailleinstitute.org student and library services, catalog for the visually impaired, national resource line, Braille Press. Council of Citizens
with Low Vision cclvi.org College scholarships, pamphlets, quarterly newsletter International
Hadley School for
hadley.edu Distance education for the blind or visually impaired the Blind
institutefor Support for families of visually impaired children books, Institute for Families
families.org videos, and support services.
Library Reproduction largeprintschool Large print reproductions of any and all educational
Service books.com materials. Delivery 2-8 weeks, order catalog.
Education programs, camps, tech training, job placement.
Each year, the Lighthouse Guild scholarship program helps outstanding and deserving legally blind high school Lighthouse of students from across the country attend college with
lighthouseguild.org Houston* scholarships of up to $10,000. Scholarships are based on strong academic accomplishments and merit, and provide additional financial support to help students successfully transition from high school to a college or university of their choice. Candidates are not required to demonstrate
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 130 General Resources for all Patients Vision
financial need.
Provides guide dogs for blind children ages 11-17. Provides ongoing seminars for families with reference to
Mira Foundation mirausa.org daily living skills, psychology of blindness, what to emphasize in orientation and mobility training
National Alliance of
acb.org Newsletter, job bank Blind Students
Braille printing and publishing house, catalogs free of
National Braille Press nbp.org charge, weekly newspapers, publications on employment, computers and more Education about blindness, referral information, literature and publications about blindness; scholarships for students who are blind and in post-secondary education, listservs, etc. National Federation
nfb.org of the Blind* Annually offers blind college students in the United States and Puerto Rico the opportunity to win one of 30 merit- based, national-level scholarships worth from $3,000 to $12,000. All scholarships awarded are based on academic excellence, community service and leadership. National Organization of
nopbc.org Magazine for parents, toy suggestions for the blind Parents of Blind Children
Recording for the Educational books free on loan, books on diskette, library Blind or Dyslexic- services, other resources. Fee-based service for employers
learningally.org Renamed to: to place printed work materials in formats accessible to Learning Ally the blind.
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 131 General Resources for all Patients Wigs and Headcoverings
Wigs and Headcoverings
WIGS
A family owned and operated wig salon located Andre of Houston Wig
wigsbyandre.com minutes from the Texas Medical Center in Houston, Salon Texas.
Offers cutting edge, non-surgical hair loss solutions
Apollo Hair Replacement apolloimage.net for men.
A full service wig salon near the Texas Medical
Billie Jean’s billiejeans.com Center that cuts, cleans, conditions and restyles wigs. Childhood Leukemia clf4kids.org/ Custom made, 100% human hair wigs with kid-
Foundation (Hug u wear) hugsuwear.php friendly hats to children around the country. Provides human hair replacements at no cost to children and young adults facing medically-related childrenwith Children with Hair Loss hair loss. Human hair replacements are provided at hairloss.us no cost to qualifying recipients every year until age 21. Group that provides halo wigs (hat with hair crownsof Crowns of Coverage attached) to children undergoing chemotherapy. courage.com Free of charge.
Glamour Tress Wigs glamourtress.com Large wig selection
hairclub.com/haircl Offers free hair restoration services to children with Hair Club for Kids
ub-for-kids disease-related hair loss
Hair Replacements by hairreplacementbye Custom hair loss solutions for those who want to
Eddie Pritchard ddieprichard.com look and feel their best.
Locks of Love locksoflove.org Free wig to patient who has financial hardship
lookgoodfeelbetter Sponsored by the American Cancer Society and Look Good Feel Better .org/programs/teen dedicated to improving the self-esteem and quality s/ of life of people undergoing treatment for cancer.
Magic yarn wigs are inspired by beloved Disney themagicyarn Magic Yarn Project characters, and invite children back to the world of project.com play and daydreaming. They are beacons of fun,
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 132 General Resources for all Patients Wigs and Headcoverings
laughter, and play, during scary times.
National Alopecia Areata
naaf.org Organization that assists people with hair loss Foundation
Provides cranial prosthetics (wigs) for children and
Pink Heart Funds pinkheartfunds.org adults with hair loss disorders, including those receiving cancer treatment. Offers a large selection of wigs and hairpieces from top designers. Over 100 wigs on. Ruby’s has been
Ruby’s Wigs rubyswigs.com serving the Houston and surrounding area for over 40 years. Free wigs to kids. Apply online and give child's
Wigs For Kids wigsforkids.org measurements
HATS/SCARVES
Provides hats to kids with cancer. Complete request Ellie's Hats ellieshats.org online.
hatsoffforcancer.or Sponsors drives for hats and gives to kids with Hats Off For Cancer g cancer
hatsscarves Good selection of cute, unusual, and useful head Hats, Scarves, and More andmore.com coverings
headbandsof Social worker or other professional request Headbands Of Hope hope.com required
Headcovers Unlimited headcovers.com Wigs and hats in kids sizes.
Distributes hats to those who have lost their hair Heavenly Hats headcovers.com due to cancer or medical treatment Hip Hats with Hair and Hairdana by Fashion with hatswithhair.com Hats with hair attached Compassion
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 133 General Resources for all Patients Wigs and Headcoverings
Love Your Melon loveyourmelon.com Will provide a hat to any child fighting cancer
Mad Capz madcapz.net Festive and various prints of hats. Cost associated
TEXAS CHILDREN’S CANCER AND HEMATOLOGY CENTERS 134 Cancer and Hematology Centers
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