Today would have been my dad's 77th birthday, the first since his passing last year. He should have died before his 53rd. Diagnosed with a rare stomach cancer called GIST at the age of 52, there was no treatment at the time, except for a couple clinical trials that were showing promising results. Only problem, they were full. He (allegedly) pitted clinical trial doctors against each other, claiming to each one he'd been accepted into the other until a spot magically opened up for him, allowing him to get access to Gleevec (imatinib), a new type of cancer treatment that ultimately saved his life. He joined an online forum and shared his experiences with other GIST patients, advocating for those newly diagnosed and helping them navigate the complicated medical, clinical trial and insurance world. The group even collected valuable data on the side effects of Gleevec, identifying them before the doctors knew. These were the early days of The Life Raft Group, now a global non-profit committed to enhancing the survival and quality of life for patients with GIST and other rare diseases. John Claybron Poss was a founding member of the Life Raft Group and on the board for over 20 years, consulting with those newly diagnosed and sharing his experiences up until the very end. The Life Raft Group recently launched a memorial fund in his honor, raising funds to carry on his legacy of persistence, advocacy and community for fellow GIST patients around the world. I'm donating today in honor of his birthday, will you? https://lnkd.in/gsawUfWb
The Life Raft Group
非盈利组织
Wayne，NJ 692 位关注者
Patient-Powered Science for Life - Enhancing survival & quality of life for people living w/ GIST & other rare diseases.
关于我们
The Life Raft Group (LRG) has a simple focus: to cure a form of cancer — GIST (gastrointestinal stromal tumors) – and to help those living with it until then. https://linktr.ee/liferaftgroup Our mission is to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment. ? To achieve this, the LRG funds and manages uniquely coordinated research initiatives that always keep the needs of the GIST patient foremost. The LRG is the only GIST advocacy organization with a dedicated research initiative led by a team of world renowned scientists and clinicians in GIST. ? The Life Raft Group provides support and education to patients and caregivers living with GIST on an individual basis by providing one-on-one counseling sessions, local in-person meetings, and a biennial meeting gathering the patient, pharmaceutical community and medical professionals together in a supportive and educational setting. The LRG also offers education to the GIST community through videos, webinars, Days of Learning, GIST specialist database, GIST-specific clinical trials database, newsletters, etc. ? The LRG is an active presence in effecting change within the GIST community. Advocacy roles ranges from helping patients with treatment access issues on a one-on-one basis, creating regional groups in underserved areas, and reporting on trends in treatment and survival to the world.
- 网站
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https://www.liferaftgroup.org
The Life Raft Group的外部链接
- 所属行业
- 非盈利组织
- 规模
- 11-50 人
- 总部
- Wayne，NJ
- 类型
- 非营利机构
- 创立
- 2002
- 领域
- Cancer Research、Patient Support、Rare Disease、Gastrointestinal Stromal Tumor、Patient Resources和Patient Education
地点
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主要
获取路线
155 US Highway 46
Suite 202
US，NJ，Wayne，07470
The Life Raft Group员工
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Christine Incontro
Career Coach | Personal Branding Expert | HR Consultant | Executive Coach
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Brian Morello
Relationship Manager ?? Events Manager ?? Salesforce CRM Power User ?? Cultivating cross-functional collaboration with internal stakeholders in both…
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P. David Josephy
Professor (retired), Molecular and Cellular Biology, University of Guelph
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Sara Rothschild
Executive Director at The Life Raft Group
动态
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Director, Genetic Counseling Program, UT Southwestern Medical Center Assistant Professor, Health Care Sciences, School of Health Professions
What started as a conversation with Sara Rothschild at SURGIST clinic in Fall 2023 officially debuted yesterday as a collaborative scientific review with Michelle, Vaia, Ruth, Margarita, and The Life Raft Group! Thrilled to work alongside some incredible people to get an updated review of SDH-deficient GIST out into the world. #GIST #Genechat https://lnkd.in/g26nBP8h
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We're #hiring a new Healthcare Product Manager - Patient Registry - P/T Contract Position in Wayne, New Jersey. Apply today or share this post with your network.
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We're #hiring a new Data and Research Associate in Wayne, New Jersey. Apply today or share this post with your network.
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This morning, we announced our 2025 planned milestones for bezuclastinib and our emerging research pipeline. With topline results expected from three registration-directed trials, 2025 is going to be transformational. Read more https://bit.ly/4hfGlr3and and listen to our CEO Andrew Robbins present a company overview at #JPM25 tomorrow, Tuesday, January 14 here bit.ly/427oSNa
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Thank you to the Alfred N. Sanzari Family Foundation for their grant funding for our GIST Mentorship Program. It is strong community partnerships like you that move our mission forward! Alfred Sanzari Enterprises #NonProfit #Community #NewJersey #rarediseases #GISTmentors
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The Life Raft Group warmly welcomes Dr. Andrew Blakely of the National Institutes of Health to our Medical Advisory Board. A long-time supporter of the LRG, Dr. Blakely has collaborated with us on educational events, virtual tumor boards, and research initiatives. He is also a key researcher in the SDH-Deficient GIST Biobank project, led by Dr. Jason Sicklick of UCSD Moores Cancer Center in partnership with the LRG and other collaborators. Dr. Blakely is also a member of the Pediatric & SDH-Deficient GIST Consortium.
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Each year, approximately 17,560 people are diagnosed with sarcoma, and around 900 of those patients receive care at Sylvester. Our dedicated researchers leverage advanced tools in molecular genetics to deepen our understanding of this complex disease. Through collaborative efforts between clinicians, researchers and basic scientists, we focus on the unique biological behaviors of sarcoma in individual patients. Discover how Drs. Lombard, Jon Trent and Rosenberg are revolutionizing sarcoma care through precision medicine—diagnosing, tracking and treating sarcoma: https://loom.ly/D5xJwS8.
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Highlights of LRG's impact in the rare disease space for 2024. PDF: https://bit.ly/Impact24LRG #NavigatingRare #ThrivingTogether #Impact2024
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Some great highlights from #CTOS2024 on OncoDaily Nice wrapup! https://lnkd.in/dcF2jq7q Connective Tissue Oncology Society.