Ugam Calling... 9th Anniversary Issue - 2018 International Childhood Cancer Survivor's Week
Vision • To ensure that every childhood cancer survivor finds his/ her way to celebrate life after winning their battle with cancer. • To facilitate their life's journey on the correct path & in the right direction. Rise, Shine and Celebrate Survivorship !
Mission • Empowerment of young survivors • Helping children with cancer undergoing treatment • Social awareness and re-bonding with society
Donations are exempted from Income Tax under section 80 (G) of the Income Tax Act Cheques / DD should be drawn in favour of Indian Cancer Society, payable at Mumbai, with a covering letter stating that the donation is for UGAM.
CONTACT • Dr Purna Kurkure – Convener, UGAM Ph no : +91 9821324504 E-mail: [email protected]
• Dr Vandana Dhamankar Ph no : +91 98191 90076 -Assistant Director, Cancer Survivorship E-mail: [email protected]
• Mr Shekhar Jha– Administrative Officer Ph no : +91 9699975276 E-mail: [email protected]
• Ms Savita Goswami - Mentor Ph no : +91 9820050072 E-mail: [email protected]
• Ms Ekta Rawat – Co-ordinator Ph no : 08805267800 E-mail: [email protected]
• Ms Preeti Phad - Member Ph no : 9702488007 E-mail: [email protected]
Indian Cancer Society Indian Cancer Society 74,Jerbai Wadia Road, Parel, Mumbai,400 012. Tel. No: 022-24161875/ 24139445/51 74,Jerbai Wadia Road, Parel, Mumbai,400 012. Tel. No: 022-24161875/ 24139445/51 [email protected] / [email protected] [email protected] / [email protected] www.ugamcalling.org www.ugamcalling.org www.indiancancersociety.org www.indiancancersociety.org
Edited by: Dr. Purna Kurkure / Arun Kumar Nadar Victors of childhood cancer DESIGNED BY: Victors of childhood cancer Illustration by: Shweta Chawre
BACK FRONT UGAM PROFILE Indian Cancer Society was established in 1951 by Dr. D. J. Jussawalla and Mr. Naval Tata as India’s first voluntary, non-profit, National Organization for Awareness, Detection, Cure and Survivorship of those affected with this disease. UGAM, Emotional support group of childhood cancer survivors, is the youngest unit of (ICS) under its survivorship program. UGAM means "To Rise", underscoring the determination of childhood cancer survivors, to rise above all obstacles in life & be VICTORS.UGAM has been set up with an aim to provide empowerment to the survivors of childhood cancers & to spread the message "Childhood Cancer is Curable" in society .UGAM was launched in 2009 on the first Sunday of June celebrated as Cancer Survivors Day across the world as a mark of celebration of life. THE UGAM FAMILY
Working Groups
Patient Support Group Marriage counseling group Prashant Suryawanshi /Nilesh Dokhe/ Vanchinathan/Mrs Sampada Sakre/ Tushar Khillare Anita Gupta
Survivor Support Group Public Relations Preeti Phad/Shifa Shaikh/Vanchinathan Ekta Rawat/Narendra Shetty
Cultural/ Event management/Creative Web Master Emmanual/ Sushant/Aishwarya/Smruti/Shifa/ Arun Kumar Nadar/Vinay Bansal/Pavan Priti More Fund –raising group Educational & Vocational support group Pranav Mukhi/Narendra Shetty/ Shalaka Mane/ Vishal Tamhankar/Inzamam/ Tushar Khillare/Sai Teja Priyanka Jadhav/ Sandeep Yadav WHAT WE DO? ▪ Create awareness about curability of childhood cancers We are grateful to all UGAM friends, donors and volunteers for their generous support. ▪ Help childhood cancer survivors to begin new life after cancer treatment and to make them We are grateful to Display House for technical support. aware that there can be and there is "normal life" after winning the battle with cancer ▪ Promote the importance of monitoring of monitoring the late effects of cancer therapies. ▪ Advocate against discrimination in society to cancer survivors. ▪ Highlight the need of public support for the cause of Childhood cancer survivors. ▪ Monthly UGAM Meeting last Sunday of every month at ICS
HOW CAN YOU HELP ? Volunteer- Help in capacity building. Help find jobs for cancer survivors Advocacy- help in promoting the issues faced like denial of Insurance, refusal of jobs Financial assistance for educational program for survivors Financial assistance for the late effects of treatment eg: infertility, hepatitis treatment, diagnostic tests etc
Victors of childhood cancer Victors of childhood cancer
Front Inside 1 Dr.Purna Kurkure holistic concept. The approach and Ms Sheila Nair Rukaiya Joshi, Convenor UGAM philosophy of the fund is to "adopt" the Director General Professor - Chairperson Hon Director, eligible cancer survivors and hand hold them Indian Cancer Society CEdSS Cancer Survivorship through every stage until fully rehabilitated SPJIMR Programme, back into the society with potential to earn a Indian Cancer Society livelihood. More than 70 survivors have been UGAM is the beginning, helped through this activity & we are hopeful UGAM is doing a great with lots of hope, life Medical Director & j o b b y p r o v i d i n g Head Pediatric Oncology that continued support from WPP India will and happiness. The spirit make this effort sustainable in future. phenomenal support to SRCC Children's among UGAM children I want to wish each and every member of young cancer survivors is that of Hospital. UGAM the very best in life and may success both emotionally and financially making them “tu na rukega ga kabhi tu na jhukega kabhi, always be with them. Together they seem to unleash their inner strength and the will to kar sapath ,kar sapath, agnipaat ,agnipath” have an unseen power that gives them strength overcome all odds. The support group has also - Harivaneshrai Bachchan. Welcome to grand new venue, The Royal and courage to reach for the sky just like their provided many survivors as a safe place to Opera House, for celebration of 9 t h name suggests share their feelings and challenges making each other emotionally stronger. For the “Life must go on uninterrupted by the disease Anniversary of UGAM ! and pain and the childhood to be filled with Fly, fly, fly high against the sky, young childhood cancer survivors who are fun and learn as other children do, is the th So high I almost touch the sky. now blossoming into young adults and UGAM has entered in 10 year of its existence example set by UGAM children. Excellence & is ready to take its first flight. The Royal Thank you, thank you, pursuing their careers and vocational interests Thank God for you, the wind beneath my with enthusiasm, it is time to look back at the in academic performance unabated by the Opera House has been the wind beneath the difficulties is what the UGAM children have wings to facilitate this first flight. We are wings. journey with UGAM and contribute to giving Jeff Silbar and Larry Henley.... other younger joins the same experience. demonstrated. Seeing them all perform grateful to The Royal family of Gondal, His fearlessly, joyfully on the ICS founder’s day Highness, Maharaja Shri Jyotendrasinhji ,Her 2018 was a delight. I salute each and every Highness, Maharanisaheba Kumud Kumari, We at Indian Cancer Society, are constantly Dr. Vandana Dhamankar researching newer programmes for the the UGAM member for the amount of energy they Honorary Director Ashish Doshi &Curator exhibit individually and more so when they Asad Lalljee for hosting us in this grand Assistant Director, Ugamites to avail of and blossom into the best Cancer Survivorship they can aspire for. are together. On the occasion of 9th UGAM venue. day, 3rd June 2018, I wish them all greater UGAM & Survivorship vertical has taken success in years to come. Congratulation to baby steps forward & started After Congratulations to UGAM Mrs Anita Garware, the entire team at ICS for doing dedicated, Completion Of Treatment( ACT) clinics in on completing 9 successful Chairperson,Rehabilit compassionate work. collaboration with Department of Pediatric years of togetherness! ation Committee Oncology, Wadia Hospital for children & Sion It is heartening to see UGAM accept new SRCC Trust Hospital under PICASSO ( Partnership in Dr. Tapan Saikia challenges in their stride as they continue to Medical Oncologist, Cancer Survivorship Optimization) project 'Over the years I have grow. PAKH, Mumbai, which was launched in 2016 with generous These young victors are a symbol of hope for witnessed UGAM's donation from HES Infra Pvt Ltd. Others like success. It has given Member NMC, ICS, and the hundreds of Childhood cancer survivors Board of Directors and KEM Hospital, Asian Cancer Institute are in that look upon them for making their h o p e t o s o m a n y Senior Advisor, ACCF pipeline. Initial journey has been slow as we extremely difficult journey, bearable. were learning nuances of getting organized children and parents that the big 'C' does not (Assam Cancer Care They deserve special mention for their have to be crippling. To see the survivors towards a common goal of standardizing positive inputs and enthusiastic contribution Foundation) survivorship care .But we are confident & showcase their different talents at the annual to all the awareness and fund raising activities function, and hear their stories to overcome determined to take it beyond the limits of of Indian cancer society ! Mumbai at Pan India level. and be effective members of society, gives me The cultural traditions of the North-East States The need of the time is to spread the word the greatest joy. The mission of UGAM to empower survivors further! There is potential to achieve more, of India, are very rich - a blend of thousands of to get them back to main stream in society has cover more milestones, add more feathers to years of tribal faith, mingling with rest of India now come to fruition .Empowerment through My most sincere congratulations to the at a later era and now waking up to our caps! A stronger advocacy of the various medical consultants who helped them through education & vocational guidance to make issues of Childhood cancer survivors is the globalisation. The music, the lyrics and the them job ready is a first step towards it. Indian their struggles, and those who have given dance forms have unique identity. These what we must do now. them the opportunity to be together to enjoy Cancer Society has launched D.J.Jussawalla There is no limit to what UGAM can achieve reveal human beings' closeness to nature. Educational & skill development fund in their days in the sun. My greatest admiration as a team! I would strongly urge the UGAM for the efforts, vision and enthusiasm of memory of Dr D..J..Jussawalla (1915- leaders to come forward and make this UGAM Foundation of the ICS, has taken an 1999)Founder Secretary & Managing Trustee Indian Cancer Society's survivorship team appreciable step to recognise and showcase happen.. that has brought joy to so many survivors. of Indian Cancer Society. WPP India CSR Let us, together, embark on this exciting the richness. I'm convinced, the audience and Foundation is the founder sponsor of this Best wishes to UGAM team who will carry the participants will be witness to a journey ahead! the torch forward.' Vive la, UGAM memorable function.
Victors of childhood cancer Victors of childhood cancer
2 3 Dr. Maya Prasad Mrs.Savita Goswami Dr. Shripad D. Banavali where lighting of lamp was done. UGAM Incharge- ACT Clinic, Mentor UGAM MD (Med; Bom), newsletter was released. Dr. Kusuma Kumary Tata Memorial Hospital Clinical Psychologist BC(Ped; USA)), ,Our Guest of honor encouraged the survivors Tata Memorial Hospital BE(Hem-Onc; USA) to maintain a positive outlook towards life and Congratulations to all Professor & Head, to continue celebrating life as it comes. She members of UGAM on Dear UGAM, Department of Medical & also appreciated the various activities carried the 9th anniversary. Congratulations..…we Pediatric Oncology, out by UGAM members.Shreyas Iyer: Indian Survivors of childhood have accomplished a Tata Memorial Hospital Cricket player was present as Chief guest . journey of nine years cancer are at a higher There was a friendly question answer session chance for developing overweight and and entering a decade. The group is growing in Congratulations to UGAM on its 9th for him by the cricket fans in the audience, lifestyle diseases (diabetes, high blood number along with the inner strength and Anniversary. UGAM has been a source of followed by felicitation of the UGAM pressure and heart problems). These can be skills. This year was full of action and inspiration for many children with cancer who members who received awards from various largely prevented by a healthy lifestyle. excitement for all the Ugamites. UGAM has participated in range of activities throughout have completed their treatment & who want to platforms last year. UGAM members who Food: 'Mindful eating', ie being aware of what contribute back to society. contributed to the program significantly were you are eating, is very important. Try to pack the year. Spreading awareness about cancer has always This movement has to increase further & also felicitated. Many young survivors gave as much nutrition in your food as possible –5 reach to every pediatric cancer center so that brilliant solo performances and enthralled the to 7 servings a day of fruits and vegetables been the prime mission of UGAM victors every child feels that they have a support from audience. There was a ramp walk by married every day, milk and milk products, plenty of who are ambassadors of survivorship. UGAM the society & they themselves be of help to the fibre and water. Limit sugar and deep fried has conducted many awareness and support couples. The program ended with UGAM newly diagnosed children with cancer. theme song sung by the UGAM members. food, and alcoholic drinks. Commercial group sessions for patients and family Gifts were distributed to all the UGAM weight gain supplements (used in gyms) caregivers in collaboration with Tata should be used with caution. Events organized by UGAM members. Memorial Hospital (Pediatric Oncology/ Exercise: Sedentary lifestyles lead to back UGAM's 8th Anniversary Celebrations pain and stiffness. Even lean and fit young Psycho-oncology Teams) and St. Jude Centre. Sarcoma Awareness Month Event individuals need to be physically active to UGAM participated in various fund raising prevent ageing. Adults need at least 30 activities and helped raising funds for the minutes of moderate to vigorous physical cause of cancer care and survivorship! Here, I activity (brisk walking/ jogging/ active would proudly appreciate all six Marathon sports), on 5 or more days of the week (150 runners for their spirit and enthusiasm to hours / week). Although weight training is not ceaselessly and dedicatedly support the cause forbidden, it should be done in moderation. of cancer survivorship. Weight Loss: Maintaining a healthy weight is Winston Churchill said, “If you want a person very important to have optimal health and prevent lifestyle diseases. A combination of to demonstrate a virtue, impute that virtue to him in advance.” When you approve of a July being an International Sarcoma healthy and careful diet along with adequate Awareness Month, a meet and greet with the exercise is usually enough for this. Those who person's potential behavior or performance, in are obese need to have a realistic and long- advance, you set up a force field of positive sarcoma patients and survivors was conducted UGAM celebrated its 8th Anniversary at Tata by UGAM in collaboration with Spandan ( V term weight loss goal and work towards energy that motivates that person to do an Memorial Hospital (TMH), Mumbai, on 4th c a r e s u p p o r t g r o u p o f s a r c o m a it,with advice from a health care team and a even better job. UGAM exhibited the same nutritionist. June The Theme was: Culture of south India. patients/survivors) at Indian Cancer Society philosophy by their ongoing psychosocial th Emotional Health: This is of course, the most The program started with an introductory on 13 July 2017. In all, 26 members, a mix of support and training, which empowered important thing in life. One should always message from Ms. Sheila Nair, Director patients and survivors attended the event. The have strategies to cope with difficult situations UGAM victors to develop immense General, ICS followed by a Prayer song and theme of the event was color yellow, as a color and build a team of family members and confidence, self-esteem and empathetic various South Indian traditional dances like for sarcoma awareness. All participants were friends who can act as a safety net. Yoga, deep communication skills. As a result, today 14 Karakattam, Kummiattam, Bharatanatyam, given a yellow balloon as a symbol of hope breathing exercises and meditation work Ugamites are working with 10 different NGOs Onam, Lombardi dance etc. Narendra and and was encouraged to write positive beautifully. working in the field of oncology and one Vanchinathan (UGAM members) did a messages . Dr. Vandana and Mrs. Vandana Avoid risk taking behavior like smoking, UGAM member has been selected for the first presentation on South Indian states and their Gupta interviewed Dr. Manish Agarwal recreational drugs and tobacco chewing. ever Postgraduate Diploma in Patient specialties. UGAM members were dressed in (Orthopaedic Oncologit), to understand about For more detailed information and your traditional South Indian attire to help create late effects of Sarcoma and what precautions specific issues, talk to your doctor. You may Navigation Training Programme: Kevat also visit the following websites : conducted by Tata Memorial Hospital and the perfect ambience. The theme was also could be followed. A number of survivors and http://curesearch.org/ , Tata Institute of Social Sciences. UGAM has depicted through the decorations put up in the care-givers came ahead and shared their http://www.aftercure.org/ carved a niche for its childhood cancer victors' auditorium as well as in the food menu. This experiences dealing with sarcoma and its late empowerment and survivorship care. was followed by the inaugural ceremony effects. The overall event had a positive vibe to it. Victors of childhood cancer Victors of childhood cancer
4 5 Counseling sessions with the parents 'CANCER DOESN'T SLEEP, SO FOR ONE ICS Founders Day TYACON 2017 NIGHT NEITHER WILL WE' is the tagline. The relay started with the survivors lap – an inspirational time when UGAM members were invited to circle the track together to celebrate victory over cancer.
UGAM members, regularly attend the parent UGAM members performed a dance support group meetings held at partner choreographed by Artscape foundation on 16th April 2018 at Grand Hyatt, Mumbai on hospitals and also at St. Jude's India Childcare ICS & UGAM were one of the supporters of Center, for parents' counseling. They help to the occasion of 67th Founder’s Day of Indian Cancer Society. TYACON, held on 2nd-3rd Sept 2017 at Tata spread the hope that childhood cancer is Memorial Hospital. Ms Sheila Nair, ICS DG curable and share their own journey with them Participation in Conferences by was invited as a panelist in the session Living which make the parents comfortable and UGAM members with the `New Normal'. Various social issues confident about their child's future. like education, employment, insurance were SIOP 2017 discussed by the panel. Twenty UGAM World Cancer Day members attended the conference. UGAM Participation at ICS events along with other survivors, participated in a Relay For Life debate “Whether Cancer needs to be included in the Disability Act”. Dr Vandana moderated the debate. Ms. Shreya Joshi and Ms Sonal Bhalke participated actively. Dr Purna Kurkure chaired the session. The debate was well-received by the audience.
Master Training Workshop On the occasion of World Cancer Day, 4th Feb 2018 various events were organized by ICS such as cricket match- oncologist v/s Relay for life is a franchised fund raising and survivors, Art workshop, Open Bus ride for awareness event of American Cancer Society child cancer patients. UGAM members which is organized round the year in over 20 participated in all the events actively. countries where more than 4 million people They won cricket match against oncologists. take part and raise funds and create awareness Aakash Kadam represented UGAM at SIOP to save lives from cancer. Indian Cancer conference which took place at Washington Society has been licensed as nodal agency for DC, US. RFL in India from 2014.This year Oberoi The abstract titled “Rehabilitation of International School, RBK International Survivor's throw Educational and Master Training Workshop for Life Skills Education was conducted by AACCI ( School and Dhirubhai Ambani International Vocational Guidance Project of UGAM: A Association of adolescent and child care in School had organized RFL on 19th Jan, 23rd Childhood Cancer Survivor Support Group of Indian Cancer Society”. was India) in Pune in collaboration with Dept of Feb and 1st March 2018 respectively. UGAM presented by him on 10th October 2017. Pediatrics D Y Patil Medical College, Pimpri was invited to participate in the event. UGAM would like to thank CCI ( Childhood on 14th & 15th September, 2017. Cancer International) for giving them the opportunity to present UGAM data at International Platform.
Victors of childhood cancer Victors of childhood cancer
6 7 The workshop was conducted by Dr Swati Participation in Events by Invitation Curtain raiser SelfV Pinkathon Bhave ( Chair,AACCI) and was co-facilitated Victory Arts Presentation by Dr Shailaja Mane (Pediatrician) and Dr Surekha Joshi (MSc, PhD). Three members f r o m I C S ( P s y c h o l o g i s t , U G A M administrative officer & UGAM member) attended the training. The ten life-skills as outlined by WHO were briefly discussed in the workshop. The workshop emphasized on training the trainers to impart life skills to adolescents which would help the adolescents deal with the challenges effectively. The Vasai Shero Trek was held on 2nd The trained trainers from survivorship vertical Curtain raiser event , SelfV 2018 was December 2017. It was an event organised by would soon propose to start these workshops organized by HCG on 16th Feb 2018 at Taj United Sisters Foundation in support of the for survivors. Lands End. UGAM was invited and Shekhar Breast cancer survivors. It was a 1.50 km trek, Victory Arts Foundation (VAF) Jha along with a few members attended the 8 Members participated in the trek from conducted annual 'VICTORY Presentation' on event. HCG has been conducting the SelfV UGAM, which was thoroughly enjoyed by Wednesday 25th October 2017 at St. Andrews everyone. PHOSSCON Auditorium, Bandra. UGAM members campaign for the past 3 years wherein cancer survivors have to upload a 60 sec inspirational participated in the event and performed a Juniorthon dance. They had been specially trained by video about their journey in fighting the Shiamak's finest dance faculty. disease. Narendra Shetty, UGAM member addressed the audience about his cancer journey & also spoke about his experience as a Self V winner in the 2016 edition.
Awareness activities and spreading hope about curability of childhood cancer Gokulashtami / Dahi Handi Event UGAM participated at PHOSSCON (Pediatric Hematology - Oncology support services conference) a 3 day conference organized from 24th-26th Nov 2017 at Kolkata by Cankids (sponsored by Leukemia 3 UGAM members aged 14-15 participated in crusaders) Arun & Narendra represented HOPE children's marathon-called juniorthon under UGAM. The conference had a session on the banner of ICS at BKC on 10th Dec 2017. whether cancer should be a part of the Disability Act' Arun spoke in favour of the Mumbai Marathon proposal of including Cancer as a part of disability & Narendra spoke against it. Dr Purna Kurkure participated in panel UGAM members were invited to join Dahi discussion. Handi Celebrations at Talav Pali, Thane on 15th Aug 2017, by Mr Rajan Vichare, Member of Parliament and trustee of Anand charitable trust. Twenty-seven UGAM members and friends participated in the event. UGAM members Priti and Ekta, who had become Hope is an annual event of pediatric oncology “Govinda” on that day, broke the Handi. They department of Tata Memorial Hospital which created awareness about curability of 6 UGAM members (5 Dream run & 1 Half was celebrated on 24th Dec 2017. The theme childhood cancer in this community event and Marathon) ran Tata Mumbai Marathon on 21st of the event was 'Laughter and Joy'. UGAM also raised Rs. 11,000 through this activity. Jan 2018. 14 members cheered them at the members participated as volunteers and in a cheering zone of Indian Cancer Society. dance performance.
Victors of childhood cancer Victors of childhood cancer
8 9 Victor's Stories same day, in order to get a string of antibiotics finishing my graduation and through my in case if I get some form of meningitis. The school and I have scored a distinction. Gopesh Chilveri Merchant Navy officer along with that I like to next day, he decided to have a CT scan, I understand and appreciate life and Hello friends... write poems and I love it very much so here are followed by a MRI scan. The whole tumor importance of family more than anything. I a m G o p e s h some of my poems which may not be my best could not be removed safely, so I was given Cancer might have affected my physical Chilveri. I was because I don't believe in good or bad and first and eleven rounds of chemotherapy for a year. ability, but it has not and will not affect my last so all of them are good if you like them then mind, I am stronger than ever. I eat healthy, I d e t e c t e d w i t h And then I received radiation therapy for H o d g k i n ' s please appreciate... study, I laugh , I travel, I fight with my seven long weeks. The operation left me lymphoma when i siblings, I am just a normal teenager now paralyzed on both side of my body and also was four. My entire living a normal life. My parents and relatives treatment including face had palsy and reduced eye sight on right give me the strength to live and encourage me. chemotherapy and Muhammad Ali side. During this whole time, my lovely It's taken 10 long years for my recovery and As I grew up until parents helped me to recover by lots of prayers not even once I felt that I was alone. I thank my radiation got completed in a year. I did my S.S.C I used to fall doctors and nurses who looked after me and Diploma in Mechanical Engineering and have sick every now and held my hands and wiped my tears and gave completed my B.tech in Mechanical then but when I support to me and my family. Without them I Engineering. UGAM is more than a family to wouldn't be here. Today UGAM has also given completed my SSC Gayatri Desai me. We were finding it difficult to pay my final me the opportunity to share my experience and went to college My name is Gayatri year engineering fees and UGAM came to my with you. It is a great platform for all cancer that's when I was D e s a i . I l i v e i n rescue. I am very grateful to UGAM for Ratnagiri and I'm 19 survivours. d i a g n o s e d w i t h standing by me and showing the faith in me. I years old. When I All I can say today is that if I can do it, you can am trying my level best to do my bit towards was 9 years old, I was do it too. Nothing is easy in life but this battle brain tumor(CANCER), and when I was makes us stronger and different than everyone Ugam. I would just want my other friends to about to appear for my H S C exam and it was d i a g n o s e d w i t h Overian cancer. I was else. Stay positive, happy and blessed. Look not let the knowledge of their past, affect their first paper and that's when the tumor got present. in grade 4th and my forward to life, experiences, fun times, severe and I had to rush to hospital however, I life was pain free and laughter. This journey has changed me for had also gone through regular check up but the good and I am sure it's changed you too. All I Swapnil Kharat doctors use to say it could be sinus and gave secure and I had never seen what hospital can say is that 'we are the ones we beat all the Hi, this is Swapnil regarding medications. I was left behind in looked like. odds ' and I am proud of us. Sheshrao Kharat from One evening, I felt bloated and my stomach my studies as all my colleagues were started hurting. My parents took me to the Mumbai. Like others continuing their studies and I thought I my life was also going doctors and after scans they realised what it nice but one fine day couldn't cope up my life and that's when I was and they took me to Mumbai. I had to Endless Journey...! all the good turned out asked why me God???. I was rushed to the undergo the surgery for removal of the tumour to be bad. It was found emergency surgery at JUPITER HOSPITAL and one ovary. It happened so fast and I was so You walked with us, that I was suffering at Thane where a tumor was a size of an apple little that I could not understand and far and beyond.. from "CANCER". The which was resected from the brain and it was comprehend what was happening to me. All I There is no end to our journey, treatment started with the first time I could feel my head is been cut knew was that it wasn't normal, it was painful and this walk... our family doctor and finally end at TMH(Tata off and the Half part was over my right eyes. and I hated the needles and being in bed. Whenever we stopped Memorial Hospital).It was a six months After multiple surgeries and radiation, I Results came back from lab and malignancy of or lagged behind, adventurous treatment which was full of drama couldn't walk, talk, or eat. I couldn't do tumour required further treatment. I came to you picked us up and Tata memorial hospital. It was a very difficult ,emotions, fun, friends and many more.. anything. I felt like it was the end of world. I gave us the hope Being a cancer patient everyone knows if he or she time for me and my loved ones. My survival could walk a little then I moved with a to march ahead.... is not treated in a good manner then he/she must was a miracle but a long road of recovery was In this beautiful journey of life, die but in my case I didn't even know what cancer wheelchair, to a walker, to a cane, and now to ahead of us. I had to stay in Mumbai for few when we see in your deep eyes, is?.From 2005 onwards after finishing my nothing. On September 9 2008, I was months and missed my friends and my sisters we found, that unconditional love, treatment and till now I have learned so much diagnosed with a malignant brain tumor, at every day. Chemo wasn't easy on me but that as deep and as forgiving from Tata as well as from UGAM. UGAM what TATA MEMORIAL HOSPITAL PAREL was the only option if I wanted to live a long as the ocean.....!! should I say about it, it's just not a foundation but a where doctors found out that it was a cellular healthy life again. All doctors and hospital family which knows how to take care of a family ependymoma, located in the posterior fossa staff were very supportive throughout my - Gayatri Desai member like me. A dream was seen by me where part of the brain (near the 4th ventricle and treatment and I can't thank them enough for almost everyone helped me fullfil it. I want to be a mid brain. The doctor advised my parents that understanding and being there for me and my I had to be admitted to the hospital on that family. Today I am 19 and one year away from
Victors of childhood cancer Victors of childhood cancer
10 11 Marathon Runners Vanchinathan S. Arun Kumar Nadar Manish H. Sase Rajesh Savla My life is full of tech, 21st January 2018 Tata right from my office to Run for a cause, support Mumbai Marathon a my NGO. But this In the year 2002, ever and feel blessed. memorable event not marathon gave me a since I was diagnosed That's what I had in only for mumbai but for unique experience. A with cancer, my parents mind when I was given me too. This was my run, 6.5 km led me to have sacrificed a lot for the opportunity to first marathon, taking t h e p a t h o f me & had faced several participate in Tata part in a dream run was enlightment. So much h a r d s h i p s f o r m y Mumbai Marathon. e n t h u s i a s m a n d treatment for which I am even more exciting, because I could know the forever grateful. My Being a cancer victor, I was full of enthusiasm nitty gritty of a marathon to be ready for the motivation I felt when I joined the crowd to run, not only to support my other fellow next time. The day started for me with towards the destination. Children, women and mother had once mentioned that Dr. Vandana survivors and patients, but also to motivate my had helped us a lot when I was undergoing reaching Cst by 7.00 and the dream run started even senior members, voicing for their and inner self, that I am no less than others. It was a by 8.40 first i started slowly and steadily as others welfare, NGOs amplifying the causes, treatment. great experience and blessing in itself to raise Although I am completely cancer free after time went by i started to enjoy the run. The stall to cheer them, such was the atmosphere. I funds and support for the cause I am born for. arrangement was super good. I thought even was overwhelmed with such experience. this fight, but to live a life post cancer one Marathon, a great platform, gave ample needs to struggle a lot & one need to have a getting out of Azad maidan will take time but it Thank you ICS for such great opportunity. opportunity to interact, spread awareness, was very well organized and ably supported strong will power which can't be achieved motivate and make others smile in million unless you have people around you to support. by Mumbai police. Reaching the cheering ways. A sincere thanks to Indian Cancer platform of ICS and volunteers cheering for us I met Shekhar Sir at the ACT clinic at Tata Society and UGAM to give me this wonderful Memorial hospital & he introduced me to was great gesture,encouraging all to do more opportunity!!!. Preeti Phad UGAM. I will never forget the support that next time. Thanks to ICS / UGAM / UNITED UGAM showered towards me. WAY OF MUMBAI for giving me an Hello freinds myself In the year 2018, my father passed away after opportunity to take part in this event. Enjoyed Preeti Pandurang which me & my family were completely the atmosphere of marathon next time will go Phad, Marathon 2018, clueless about the road ahead. I disclosed my Ekta Rawat for additional kilometres which will be worth was a unique event of difficulties to Shekhar Sir, Shreya Madam & going. Thanks to all who helped me to raise my life. Being a Social Vandana Madam. I told them that it would be Dream Run 6.5km funds and those who gave me this opportunity. Worker by profession very difficult for me to pay my college fees J u s t a s t h e n a m e A very big Thanks. I have participated in because of my present situation. UGAM came suggest, it was a run for to my rescue. They paid for my college fees. me to my destination. In Shweta Chawre many events, but this one was different. I Shreya madam helped my clear my dreams, though our always believed, in order to motivate others, psychological difficulties & guided me body is physically I was a sprinter before I we should first motivate our inner self and through my difficult times. unconsious, our mind was diagnosed with hence regular practice for the race began for I want to thank UGAM for all the help & and heart are constantly working, the same Osteosarcoma in 2008.I me. I practiced for 2 months to be a part of it , support!!!! feeling I had when I ran. I was running with used to run 100 mts, 8 this brought more self-confidence. The day my heart and soul in it. A challenge and a K.M. marathons and arrived and with the same level of confidence contentment to achieve and to prove that we 200mts. I had a total and enthusiasm, my race began with my are victors and victors are different. k n e e r e p l a c e m e n t f e l l o w m e m b e r s . T h e s e n s e o f accomplishment was achieved, stating " Supporting the cause has made me a better procedure with titanium implant in my right person, living with humanity and contributing longer survivors are not equal but different leg.It put a halt to my running and all stressful and thus can do things differently and in much to it is what I will always do. Keeping the activities. It has been by dream ever since I spirit in me alive. more dedicated manner". was operated 10 years ago, to participate again A cancer survivor by chance, a victor by soul. in a marathon. I was given a wonderful Special thanks to all my doctors, ICS, opportunity by UGAM to take part in Tata UGAM, supporters and family, without you Mumbai Marathon, and my dream finally this journey was not possible. came true. I finished the 6 K.M. Dream Run. I never thought I could ever be a marathon participant but I did. Thank you UGAM :)
Victors of childhood cancer Victors of childhood cancer
12 13 DR D. J. JUSSAWALLA EDUCATION & VOCATIONAL SKILLS FUND
The incidence of cancer all over the world is The aim of financial support program is to increasing. However with improved provide funding for deserving candidates who modalities of treatment, cure rates are also wish to pursue their academics or wish to do a improving. An increasingly important issue in vocational course when all other funding oncology is to evaluate quality of life (QoL) in options have been exhausted. The uniqueness cancer patients and survivors. of the fund is in its holistic approach ,not For children and adolescents with cancer, merely limited to disbursal of the amounts but continuing education is a major challenge. guiding their career & talent discovery Because of prolonged duration of treatment through psychosocial counseling & study and the toxicities of the therapy, many skills workshops. The objective is to make children have gaps in their education. Some them job ready with a potential to earn may be motivated to continue education livelihood & excel in their chosen field to best during or after the treatment but for many of their abilities. families having a child diagnosed with cancer is an enormous financial strain. In many cases one or more parents must leave their jobs in Ms Rama Iyer order to care for their sick child. The end result Director General, WPP India CSR can be an inability to meet even the most basic Foundation daily expenses; so education may take a backseat especially for a girl child.
Cancer diagnosis or the side effects of cancer therapy may leave certain patients with WPP India CSR Foundation continues to be learning disabilities or other handicaps due to inspired by the UGAM Initiative taken by the which they may require alteration in their Indian Cancer Society. As each of our children career path. reach their educational milestones through the Cancer survivors; especially childhood cancer UGAM Survivorship programme, we survivors have a whole life ahead of them. strengthen our resolve towards these kids and They need to do the best of their ability to have their journey of lifetime achievements. a productive adulthood. ICS is pleased to announce the launch of Congratulations to the UGAM team for Dr D J Jussawalla Education and Vocational making this possible. We wish them the very skills fund for cancer survivors. WPP India best as they complete 9 years of great work CSR Foundation is the founder sponsor of this and hope they will continue to support several fund. other patients & survivors in their recovery.
Victors of childhood cancer Victors of childhood cancer 14 15 We remember you...
Wasim Ansari Mr. Ranjan Kapur Wasim Ansari-25, our Our beloved Mr. Ranjan beloved UGAM member Kapur passed away on was a brain tumor survivor January 27th, 2018 . He was who had unfortunately associated with the Indian relapsed last year. He was Cancer Society as its Vice an active member who Chairman. He played an always made sure that he integral role in setting up attended most of our ‘ D r D J J u s s a s w a l l a awareness activities & events. Wasim was Educational & Vocational skills fund’ through always humorous by nature joking around at one of the CSR initiatives of WPP India for our monthly meetings. We at UGAM would deserving young cancer survivors who want to terribly miss Wasim's absence pursue their education but can’t do so because of financial constraints post treatment. He was instrumental in Branding of ICS & forming a new logo for ICS ,UGAM. His absence will be terribly felt by all of us at UGAM in the years to come.
We are proud of you
Dr. Purna Kurkure, Convenor- UGAM was given award Legend in Pediatric O n c o l o g y b y T i m e s H e a l t h c a r e Achievers,Mumbai 2018 in felicitation ceremony on 26/05/2018 for her outstanding contribution in field of Pediatric Oncology.
Sandeep Yadav Sandeep Yadav, UGAM member was awarded the Victor’s award by Vcare Foundation Song Written by: Shashank Johri & Composed by: Immanuel
Victors of childhood cancer Victors of childhood cancer
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