ThyCa Annual Report for 2005 www.thyca.org ThyCa: Thyroid Cancer Survivors’ Association, Inc. www.thyca.org • 1-877-588-7904 • [email protected]
Annual Report for 2005
Organization Overview ThyCa: Thyroid Cancer Survivors' Association, Inc.
Board of Directors, December 2005 These are the members of ThyCa’s all-volunteer leadership and management team: Gary Bloom, Chair, Maryland Kurt Alexander, Gen’l Counsel, Florida Evelyn Gross, Pennsylvania Leah Guljord, Assistant Chair, Florida Joel Amromin, California Cheri Wallace Lindle, Oklahoma Ron Grafman, Treasurer, Maryland Sara Brenner, Virginia Peggy Melton, Texas Alan Braunstein, Rec. Sec., New York Joni Eskenazi, Washington Betty Solbjor, Massachusetts Cherry Wunderlich, Corr. Sec., Maryland
Message from the Board Chair
Dear Friends,
In 2005, we marked the 10th anniversary of ThyCa’s start in 1995. ThyCa continues to reach out in ever-broadening ways, thanks to the donated talents of hundreds of dedicated volunteers.
Thyroid cancer survivors, family members, friends, and health care professionals gave tremendous support during 2005. Many volunteers are coping with the challenges of their own thyroid cancer. Some have lost loved ones to this disease. We are extremely grateful for the outstanding dedication of our volunteers, and the support of our generous donors and organizational supporters.
Again this year, ThyCa increased and strengthened our network of free resources, available worldwide. We expanded our award-winning educational web site and free downloadable publications. We held a wide variety of successful educational meetings, including support groups, regional workshops, and our annual international conference.
As we all dream of a cure for all thyroid cancer, we are proud to continue to award thyroid cancer research grants through our alliance with the American Thyroid Association. Thanks to everyone’s generosity, our revenues grew to $340,000 in 2005. Because we are an all-volunteer organization, every dollar contributed to ThyCa goes directly to support our wide array of services, awareness and outreach, and research funds. We are proud of the fact that 100% of all money raised goes directly to ThyCa’s operations and research efforts,
We are excited about initiatives ThyCa has organized, and about our constructive alliances with medical professionals and endocrine and cancer associations. We will continue to strengthen our support for everyone whose life has been touched by thyroid cancer, to ensure that no one feels alone as they cope with this disease.
This Annual Report focuses on ThyCa’s services and accomplishments during 2005. Please visit our web site often
We look forward to the future, committed to working together and further strengthening our efforts to help us all.
Wishing you all the best of health,
Gary Bloom Chair, Board of Directors ThyCa Annual Report for 2005 www.thyca.org 2
Medical Advisory Council ThyCa appreciates the valuable information and guidance from the many thyroid cancer specialists and other professionals who are members of our Medical Advisory Council. Thank you to Nicholas J. Sarlis, M.D., Ph.D. for his many years of service.
Cytopathologist Dentist and Oral Oncologist
Yolanda C. Oertel, M.D. Mark S. Chambers, D.M.D., M.S. Washington Hospital Center, Washington, DC University of Texas M.D. Anderson Cancer Center, Houston, TX
Endocrinologists
Kenneth B. Ain, M.D. Kenneth D. Burman, M.D. University of Kentucky Medical Center, Lexington, KY Washington Hospital Center, Washington, DC
Robert F. Gagel, M.D. Bryan R. Haugen M.D. University of Texas M.D. Anderson Cancer Center, Houston, TX University of Colorado Health Sciences Center, Denver, CO
Paul W. Ladenson, M.D. Stephanie L. Lee, M.D., Ph.D. Johns Hopkins Medical Institutions, Baltimore, MD Boston Medical Center, Boston, MA
Ernest L. Mazzaferri, M.D. Matthew D. Ringel, M.D. University of Florida Shands Cancer Center, Gainesville, FL Ohio State University Comprehensive Cancer Center, Columbus, OH
Arturo R. Rolla, M.D. Steven I. Sherman, M.D. Beth Israel Deaconess Medical Center, Boston, MA University of Texas M.D. Anderson Cancer Center, Houston, TX
Monica C. Skarulis, M.D. R. Michael Tuttle, M.D. National Institutes of Health, Bethesda, MD Memorial Sloan-Kettering Cancer Center, New York, NY
Nuclear Medicine Physicians
Jeffrey A. Cooper, M.D. Donald Margouleff, M.D. Association for the Accreditation of Human Research Protection N o rth Shore University Hospital, Manhasset, NY Programs, Inc., Washington, DC
Douglas Van Nostrand, M.D. Washington Hospital Center, Washington, DC
Nursing Professor-Researcher Thyroglobulin Researcher
Pamela Schultz, Ph.D., R.N., M.S. Carole A. Spencer, Ph.D., F.A.C.B. New Mexico State University, Las Cruces, NM USC Endocrine Services Laboratory, Los Angeles, CA
Surgeons
Jeffrey F. Moley, M.D. David Myssiorek, M.D. Washington Univ. in St. Louis School of Medicine, St. Louis, MO Long Island Jewish Medical Center, New Hyde Park, NY
Service Overview: Survivorship Education, Support, Resources, Public Awareness
Our free education, support, awareness, and outreach serve people being tested, treated, or monitored for any type of thyroid cancer, as well as health care professionals and the public. These free services are made possible by the efforts of numerous volunteers and in-kind donations. Funding comes from membership dues, individual donations, and unrestricted operating grants. Among our 2005 accomplishments:
Web Site www.thyca.org. Our award-winning New Anaplastic Thyroid Cancer Web Site. educational web site, expanded to more than 500 pages, http://www.thyca.org/atc/. This resource, developed plus links to key medical information and patient and through volunteers’ commitment to sharing, gives caregiver support resources. During 2005, our web site patients, families, and medical professionals ready access received more than 200,000 visits each month from to key information about one of the most aggressive of all survivors, caregivers, and health care professionals. cancers. Numerous leading thyroid cancer specialist physicians Local Support Groups. Our local support groups provide ongoing input and review of the web site’s increased to 60 groups in 35 states. Support groups medical content. provide important face-to-face support and local networking to thyroid cancer survivors and caregivers. ThyCa Annual Report for 2005 www.thyca.org 3 hit TV series JAG and thyroid cancer survivor. ThyCa Person to Person Network (TPPN). This one-on-one support service matches patients around the Media Coverage. ThyCa, thyroid cancer, and ThyCa globe to volunteers with the same type of thyroid cancer. volunteers around the country received media coverage in articles in local and regional newspapers. E-Mail Support Groups. ThyCa’s nine e-mail groups had over 6,800 participants at year-end, providing Thyroid Cancer Wristband, Magnet, and Ribbon Pin support 24 hours a day. Support Outreach and Awareness. We introduced the Thyroid Cancer Awareness Wristband and Magnet in One-to-One Support and Outreach. Our Person-to- 2005, and continued to provide the Thyroid Cancer Person Network, Toll-Free Number, and Correspondence Ribbon Pin. Thousands of survivors, caregivers, and Team served more than 3,600 individuals and friends wear, display, and give them. They are available organizations in 2005. We mailed materials to over 4,000 for order on the ThyCa web site. Proceeds support our physicians, hospitals and community groups. support services and thyroid cancer research. Free Low Iodine Cookbook. We published the Awareness and Outreach through Exhibits. ThyCa expanded 5th Edition (2005) of our acclaimed free participated in more than 40 events in the USA and downloadable Low Iodine Cookbook. It’s available on Canada during 2005. These included health fairs, our web site and by mail. We encourage you to share it seminars; meetings of the National Organization for Rare with your medical team. Medical advisors and other Disorders and CURE Today Magazine; and professional committed medical professionals provided the latest medical meetings of the American Association of information for the low-iodine diet. We also published Clinical Endocrinologists (AACE), American Society for one-page Low Iodine Diet Guidelines in both English Therapeutic Radiology and Oncology (ASTRO), and Spanish. American Society of Clinical Oncology (ASCO), ThyCa Journeys Newsletter. We distributed our free American Thyroid Association (ATA), The Endocrine online newsletter to more than 9,000 people, and Society, and Society of Nuclear Medicine (SNM). published it on our web site as well. ThyCa Comments at FDA Workshop on Therapeutic Spanish Translation. We have begun translation of web Equivalence of Levothyroxine Sodium Products. site content. These materials are available on the web On May 23, 2005, U.S. Food and Drug Administration site. There will be more to come in 2006. (FDA) staff met with representatives of the American
Workshops and Guest Speakers. ThyCa sponsored four Thyroid Association, American Association of Clinical free one-day Regional Workshops in DC Capital Area, Endocrinologists, and The Endocrine Society. ThyCa Florida, Midwest (St. Louis area), and Southern New presented a statement supporting specialists’ advice to Jersey. These events drew more than 300 participants. avoid changing brands without being re-tested for TSH. Numerous physicians and other specialists spoke at these Details are in our web site’s News section. meetings as well as at ThyCa support group meetings. Medical Advisors. ThyCa receives invaluable support, International Conference. Our 8th Annual International information, review and input on web site material, and Thyroid Cancer Survivors’ Conference in Denver, participation as event speakers, from our distinguished Colorado, featured more than 60 speakers and drew more Medical Advisory Council of 21 thyroid cancer than 400 participants from 37 states, District of specialists from major centers around the United States Columbia, Canada, and Philippines. The 9th International as well as from numerous other committed professionals. conference will be held on October 27-29, 2006 in Financial Supporters and Grantors. ThyCa’s free Orlando, Florida. The 10th International Conference will services, publications, events, and outreach are made be held in San Francisco, California in October 2007. possible by our volunteers and from the generous Thyroid Cancer Awareness Month. ThyCa sponsors financial support of our members, individual donors, and Thyroid Cancer Awareness Month each September. year-round financial supporters. Our thanks to our 2005 Activities year-round raise awareness of thyroid cancer, Grantors: Abbott Laboratories, AstraZeneca, Genzyme early detection, treatment, and lifelong monitoring. Therapeutics, King Pharmaceuticals, and KRONUS. ThyCa volunteers, medical professionals, and community Support from International Association of Business organizations distributed awareness materials. Communicators. ThyCa was honored to receive a grant Thyroid Cancer Awareness Brochure Features of professional expertise from the International Actress Catherine Bell. We have distributed over 75,000 Association of Business Communicators. free copies worldwide of our Thyroid Cancer Awareness Brochure featuring actress Catherine Bell, co-star of the ThyCa Annual Report for 2005 www.thyca.org 4 Thyroid Cancer Research Grants. ThyCa’s research the American Thyroid Association. All of this occurs funds continue to achieve significant growth. ThyCa because of our collective commitment. Thanks to all who awarded its 3rd and 4th research grants in 2005, including participate in our year-round research fundraising efforts. our first grant specifically for Medullary Thyroid Cancer. Volunteers—Thank You. Thanks to our more than 250 The recipients are researchers at University Hospital volunteers for the tremendous efforts you contributed. Duesseldorf, Duesseldorf, Germany, and University of What we are doing ensures that no one who follows us Texas M.D. Anderson Cancer Center, Houston, Texas. with thyroid cancer will have to feel as alone as we did. Our web site has details. All ThyCa Grant awardees are selected through a peer review process by the experts of
Research and Research Fundraising To ensure continuing expansion of urgently needed thyroid cancer research, ThyCa: Thyroid Cancer Survivors’ Association, Inc., began fundraising for thyroid cancer research in 2001. In 2003, we proudly awarded the first-ever patient-funded Thyroid Cancer Research Grant. We have continued to award research grants each year since then.
ThyCa sponsors two Research Funds. We welcome contributions of any size. Our Thyroid Cancer Research Fund is dedicated to research on papillary, follicular, variants, and anaplastic thyroid cancer. Our Medullary Thyroid Cancer Research Fund is dedicated to research on medullary thyroid cancer.
Thanks to the continuing growth in contributions, ThyCa awarded our third and fourth scientific and clinical research grants in 2005, in alliance with the American Thyroid Association. Experts from ATA reviewed the applications and selected the recipients. In Fall 2005, we committed to awarding two additional 2-year grants in Spring 2006.
Supporters of ThyCa’s community, including thyroid cancer survivors, loved ones, and medical professionals, have all joined together in varied ways to raise funds and awareness. Keys to our fundraising success were the ongoing contributions and tribute donations in honor and memory of loved ones and to commemorate special family occasions. We are most grateful to everyone who contributes to ThyCa and makes tribute donations. We also thank the many volunteers who have initiated and organized creative and highly successful individual fundraisers during the year. Our largest event was our Fourth Annual Benefit Dinner/Auction, a wonderful evening of tribute and support, held in conjunction with our annual conference. Further Rally for Research events included outstanding benefit Golf Tournaments, Marathon Runs, the Ivy Fashion Benefit, and Individual Walks dedicated to ThyCa’s research funds.
Through these efforts, we hope that the future will bring cures for all thyroid cancer.
Statement of Financial Position ThyCa: Thyroid Cancer Survivors’ Association, Inc. For the Years Ending December 31, 2005 and 2004
ASSETS 2005 2004 Cash and Cash Equivalents $423,593.00 $256,085.00 Inventory $2,772.00 $2,772.00 Receivables $29,301.00 $12,499.00 Other Assets $22.00 $22.00 Equipment, Net $2,113.00 $2,912.00 Total Assets $459,445.00 $274,290.00 LIABILITIES AND NET ASSETS Liabilities $62,744.00 $706.00 Net Assets $459,445.00 $274,290.00 Restricted Assets $270,925.00 $177,646.00 Revenues $339,732.00 $159,740.00 Expenses (See Note 1 about 2005 and 2004) $216,614.00 $91,093.00
Notes: 1. ThyCa’s 2005 and 2004 expenses include the $50,000.00 and $25,000.00 thyroid cancer research grant distributions, respectively. 2. ThyCa’s audited financial statements are available upon written request.
Thank You Our special thanks to all our constituents, our volunteers, our medical advisors, and our donors for your terrific support and involvement in 2005. Truly, you’re all helping make a difference to people whose lives have been touched by thyroid cancer. We look forward to an even better year of service and support in 2006.