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Update on the Jennifer Hunter Yates Sarcoma Foundation Susan Erickson Jennifer Hunter Yates Sarcoma Foundation
[Editor's Note: This is another article in our ongoing "An Update on" series. These articles are intended to bring awareness to the sarcoma community of the goals, activities, and resources of various sarcoma advocacy organizations.]
The Jennifer Hunter Yates Sarcoma Foundation (JHYSF) was created in memory of Jennifer Hunter Yates who died in 2004 from complications of Malignant Peripheral Nerve Sheath Tumor and Osteosarcoma. Jen’s family, friends, and medical care providers joined forces to form a Massachusetts non-profit organization that provides funds for sarcoma research, education, and patient support to sarcoma patients and families at Massachusetts General Hospital (MGH).
JHYSF’s goals are: C –Community. JHYSF hopes to provide sarcoma patients and families with a sense of community, since this is such a rare cancer. A- Awareness. JHYSF has sponsored legislation denoting the last week of April Sarcoma Awareness Week in Massachusetts. JHYSF’s events have also raised awareness of this disease throughout Massachusetts by participating in the international Team Sarcoma event held in July. R – Research. JHYSF provides funding to MGH to help support new clinical trials, and to support basic sarcoma research at MGH. E – Education. Through JHYSF’s efforts, MGH sponsors a “Meet the Sarcoma Experts” seminar for the past two years. S – Support. Funding also assists sarcoma patients and their families with travel expenses, unmet medical expenses, and other expenses incurred as the result of being a sarcoma patient.
JHYSF has taken major steps in fighting sarcoma. A new goal is to provide educational opportunities for Primary Care Physicians and Emergency Room Physicians in identifying sarcomas. Over the past four years, we have raised over $400,000 to support the Center for Sarcoma and Connective Tissue Sarcoma at MGH.
12,402 Steps to Cure Sarcoma Walk
Community The 12,402 Steps to Cure Sarcoma Walk, the Team Sarcoma/JHYSF walk, and the Meet the Sarcoma Experts Seminar all provide opportunities for sarcoma patients and their families to connect with one another. Throughout Jennifer’s illness, she and her family never met another patient or family who were dealing with sarcoma. As one of our survivors has stated, “Because sarcomas are so rare, I felt that I was the only person in the world going through this mysterious form of cancer. People were sympathetic, but I needed people who could understand what I was going through and also who may have relevant information and advice for me. In the world of cancer, having a diagnosis of sarcoma can be quite lonely. JHYSF has filled a much needed void by bringing together those whose lives have been affected by sarcoma.”
Awareness JHYSF was one of the first sarcoma advocacy groups to petition their state legislature to declare a Sarcoma Awareness Week in the Commonwealth of Massachusetts. Through the 12,402 Steps to Cure Sarcoma Walk, JHYSF continues to put the word sarcoma out in the public domain. In fact, a reporter interviewing the walk chair in 2007, asked the chair about a lump that her husband had for five months. The husband, a 32 year old, healthy soccer player, was told it was a hematoma or a muscle pull by numerous doctors. Advised to get a MRI, this patient found out he had Ewing’s sarcoma. After numerous months of chemotherapy, surgery, and more chemotherapy, a year later, he walked in this year’s event. As he stated, “I’m alive because of the sarcoma walk. Had it not been for this organization, I would have gone on for months thinking I had a bruised leg. I sincerely believe that I am here today with my wife and three sons because of JHYSF.”
Research Through JHYSF’s funds, MGH has been able to quadruple its clinical trials in the past three years. In addition to clinical trials, funds also support the Yates Scholar position at MGH. Dr. Choy is currently working on pharmacogenomic analysis of heritable DNA variations for response to chemotherapy, high-throughput genotyping of osteosarcoma DNA samples for oncogene mutations, and comparison of human and canine genes for predisposition to angiosarcoma. JHYSF has also funded projects undertaken by Dr. Springfield Dempsey, Dr. Kevin Raskin, Dr. Fran Hornicek, Dr. Sam Yoon, Dr. Tom Delaney, and Dr. Yen-Lin Chen.
Education Education continues to be an important facet of JHYSF’s mission. The Meet the Sarcoma Expert Seminar, held each year in November at MGH, brings a member from each discipline of the MGH Sarcoma team together to give patients and families an overview about new advances in sarcoma research and treatment, and to provide a question/answer session at the end of the seminar. For this year’s walk, a program book was developed to distribute to walkers, corporate sponsors, and medical care providers. This booklet contains information about sarcoma, survivor stories, web resources, and the signs and symptoms of sarcoma. JHYSF also maintains a website that contains additional resources. In addition, JHYSF has prompted the sarcoma staff to develop a Sarcoma Education Resource Guide for newly diagnosed sarcoma patients.
Support JHYSF continues to support patients in a variety of methods. In one such case, “ A wonderful man with advanced sarcoma was desperate to get an experimental drug to treat rapidly worsening disease. Regulations required that the consent form be available in his first language. Getting a consent form translated into Albanian by the usual processes would have taken several weeks and who knows how it would be paid for. Because the Jennifer Hunter Yates Sarcoma Fund could pay for a written translation immediately, we had him registered and started on the new therapy within the week. I cannot tell you how happy it made me to tell him ‘Yes, you can have the treatment.’”
JHYSF is hopeful that with increased awareness, education and funding for research, that the number of deaths due to sarcoma will decrease during the next ten years. As Margaret Mead said, ““Never underestimate the power of a few committed people to change the world. Indeed, it is the only thing that ever has.”
For further information about JHYSF, please visit our website or contact Susan Erickson.
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