The Life Raft Group partnered with Deciphera Pharmaceuticals and Dr. Jonathan Trent of the Sylvester Comprehensive Cancer Center to present “ctDNA and the INSIGHT Study”. During this virtual presentation, Dr. Trent explained how ctDNA works as a non-invasive method to monitor mutations and disease progression, and how it may help personalize treatment strategies for GIST patients. Denisse Evans, Sr. Director of Data Management & Research for the LRG, presented the results and analysis of the LRG’s recent patient survey: Understanding Mutational and ctDNA Testing for patients in the U.S. She highlighted how patients currently access and understand testing, key barriers to uptake, and what these findings reveal about the real-world experiences of the GIST community. Denisse also discussed how these insights can help shape future education, advocacy, and research efforts to ensure patients have the tools they need to make informed decisions about their care. Learn more about GIST: https://liferaftgroup.org/powered/ Join the Life Raft Group: https://liferaftgroup.org/life-raft-group-membership-application-form/ DONATE: https://bit.ly/DonateLRG2025
ctDNA and the INSIGHT Study
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLnlZTnBneG9feFJB
Rashi Kapoor of Sachin Sarcoma Society discusses barriers to GIST treatment. Co-Led by The Life Raft Group and the Sarcoma Patient Advocacy Global Network (SPAGN), New Horizons GIST convenes representatives from several countries to discuss critical information about GIST that impacts the global GIST patient and medical communities. New Horizons GIST Consortium has created a Global Advocate Academy Course (GAAC) targeted towards GIST patients, caretakers, oncologists, researchers, and organization representatives located worldwide. The GAAC covers topics integral to advocating for systems and policy changes within government, scientific, and pharmacologic settings. For more information or questions, please contact liferaft@liferaftgroup.org https://liferaftgroup.org/ https://www.sarcoma-patients.org/
New Horizons - Barriers to Sarcoma Treatment
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLkRENkk0Vi05WG1r
Jan Geissler of Patvocates & European Patient Advocacy Institute discusses evidence-based patient advocacy. Co-Led by The Life Raft Group and the Sarcoma Patient Advocacy Global Network (SPAGN), New Horizons GIST convenes representatives from several countries to discuss critical information about GIST that impacts the global GIST patient and medical communities. New Horizons GIST Consortium has created a Global Advocate Academy Course (GAAC) targeted towards GIST patients, caretakers, oncologists, researchers, and organization representatives located worldwide. The GAAC covers topics integral to advocating for systems and policy changes within government, scientific, and pharmacologic settings. For more information or questions, please contact liferaft@liferaftgroup.org https://liferaftgroup.org/ https://www.sarcoma-patients.org/
New Horizons - Evidence Based Advocacy
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLld1UEFWOUNBWXRR
Alessandra Durstine of Catalyst Consulting Group LLC discusses coalition building, communication, & movement building. Co-Led by The Life Raft Group and the Sarcoma Patient Advocacy Global Network (SPAGN), New Horizons GIST convenes representatives from several countries to discuss critical information about GIST that impacts the global GIST patient and medical communities. New Horizons GIST Consortium has created a Global Advocate Academy Course (GAAC) targeted towards GIST patients, caretakers, oncologists, researchers, and organization representatives located worldwide. The GAAC covers topics integral to advocating for systems and policy changes within government, scientific, and pharmacologic settings. For more information or questions, please contact liferaft@liferaftgroup.org https://liferaftgroup.org/ https://www.sarcoma-patients.org/
New Horizons - Coalition Building
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLjlwRE5GQVZwNkEw
An extended access program or EAP allows a patient to benefit from life-saving treatment before FDA approval. This can be life-changing for people living with rare or advanced diseases. #EAP #GISTeducation #clinicaltrials Questions? Email liferaft@liferaftgroup.org
Extended Access Program - What is an EAP?
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLlJMWjVZTlFlSG5z
The LRG Team & UCLA Health hosted an unforgettable GDOL Los Angeles!✨ Thank you to everyone who came together — patients, caregivers, doctors, researchers, and advocates — to share knowledge, build connections, and strengthen our community. 💙 Your stories, questions, and support remind us why these gatherings matter so much. Together, we’re not just raising awareness — we’re creating hope and pushing forward for better treatments and brighter futures. #GDOL #PatientVoices #thrivingtogether #GISTEducation
GDOL Los Angeles
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Al Berg of the AARP NJ Speakers Bureau presented “Making Cents of Caregiving” on August 12, at 12PM ET. In this informative and educational session, he introduced essential information caregivers need to more easily manage the financial complexities of caregiving. Over the course of the presentation, he showed how to incorporate financial tips and resources into your caregiving. AARP Resources: https://www.aarp.org/caregiving/ https://www.aarp.org/caregiving/prepare-to-care-planning-guide/ https://www.aarp.org/caregiving/financial-legal/?intcmp=AE-CAR-SUBNAV-LEG https://www.aarp.org/content/dam/aarp/secure/caregiving/financial-workbooks/aarp-caregiving-financial-workbook-fillable.pdf https://learn.aarp.org/ Learn more about GIST: https://liferaftgroup.org/powered/ Join The Life Raft Group: https://liferaftgroup.org/life-raft-group-membership-application-form/ DONATE: https://bit.ly/DonateLRG2025
Making Cents of Caregiving
YouTube Video VVUyZ1JFN3Qta1prZ0gwMlRhaWJlN2xRLkxOM1RFWjh4cG4w
El Día del Aprendizaje sobre los Tumores del Estroma Gastrointestinal (GIST) fue un espacio diseñado para pacientes y cuidadores, donde se compartió información clave sobre este cáncer poco común, se ofreció apoyo y se brindaron herramientas para afrontar el camino con GIST. Más información sobre GIST: https://liferaftgroup.org/powered/ Únete a Life Raft Group: https://liferaftgroup.org/life-raft-group-membership-application-form/ DONA: https://bit.ly/DonateLRG2025
Día del aprendizaje sobre GIST en español
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GIST Ride Highlights Reel
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