Virtual GIST Patient Support Group
2024-02-06 18:00 - 19:30, 2024-03-05 18:00 - 19:30, 2024-04-02 18:00 - 19:30, 2024-05-07 18:00 - 19:30, 2024-06-04 18:00 - 19:30, 2024-07-02 18:00 - 19:30 (America/New_York)
The Patient Support Group meets via Zoom on the first and third Tuesday of each month from 6:00 PM – 7:30 PM ET (NYC Time).
We will start each group with a “Round Robin” in which anyone who feels like updating the group on how they are doing/feeling can do so. There is no pressure to speak if you prefer to simply listen. Once we complete our updates, the group will have the opportunity for organic conversation to develop in relation to our emotional experiences around GIST, and other challenges that we may be experiencing as a community.
In order to be able to moderate a flowing discussion, the group will be capped at 15 people each month. The first 15 people into the Zoom waiting room will participate. Keep in mind that since the group is now open, you don’t necessarily have to attend each month to participate.
Contact Brian Morello to join: bmorello@liferaftgroup.org

Virtual GIST Caregiver Support Group
2024-02-07 13:00 - 14:00, 2024-03-06 13:00 - 14:00, 2024-04-03 13:00 - 14:00, 2024-05-01 13:00 - 14:00, 2024-06-05 13:00 - 14:00, 2024-07-03 13:00 - 14:00
Monthly Virtual Support Group for GIST Caregivers
Held on the first Wednesday of the month
LRG hosts a monthly virtual support group for the caregivers. We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling during this journey as a caregiver. The group will be a safe space not only to feel supported by your fellow caregivers, but also a place to share our own coping mechanisms, concerns, successes and trials. All information shared will be kept confidential.
Contact Brian Morello to join: bmorello@liferaftgroup.org
About the Group Leader:
Marlene Nei, GIST Caregiver
As an active member of The Life Raft Group, Marlene advocates for the needs of the caregiver community because she feels they are an underrepresented group. It is her mission to advocate for the entire GIST community making sure they are equipped with the appropriate resources on their GIST journey.

Virtual Florida Support Group
2024-02-12 18:00, 2024-03-11 18:00, 2024-04-08 18:00, 2024-05-13 18:00, 2024-06-10 18:00, 2024-07-08 18:00
Florida Support Group
Zoom, 2nd Monday of the Month – 6pm ET
Our moderator is a fellow GISTER/LRG Member from Florida diagnosed with GIST in late 2016.
If you wish to attend, please email Brian Morello: bmorello@liferaftgroup.org for the Zoom link for the meeting.

Virtual GIST Patient Support Group
2024-02-20 18:00 - 19:30, 2024-03-19 18:00 - 19:30, 2024-04-16 18:00 - 19:30, 2024-05-21 18:00 - 19:30, 2024-06-18 18:00 - 19:30
The Patient Support Group meets via Zoom on the first and third Tuesday of each month from 6:00 PM – 7:30 PM ET (NYC Time).
We will start each group with a “Round Robin” in which anyone who feels like updating the group on how they are doing/feeling can do so. There is no pressure to speak if you prefer to simply listen. Once we complete our updates, the group will have the opportunity for organic conversation to develop in relation to our emotional experiences around GIST, and other challenges that we may be experiencing as a community.
In order to be able to moderate a flowing discussion, the group will be capped at 15 people each month. The first 15 people into the Zoom waiting room will participate. Keep in mind that since the group is now open, you don’t necessarily have to attend each month to participate.
If you wish to attend, please email supportgroups@liferaftgroup.org

GIST Leaping into Clinical Trials
2024-02-29 13:00
REGISTER
Join us as we leap into the world of GIST clinical trials. In this session of our ‘Let’s Get the GIST of It Series’, we will discuss new and emerging clinical trials, as well as updates from existing trials. We will focus on details of each trial including trial site locations and eligibility criteria.
We will talk about trials that are for KIT, PDGFRA, SDH-deficient mutations along with NTRK fusions. The session will be interactive, so attendees are encouraged to ask questions and participate. We invite patients and caregivers to attend.
The event will be hosted by Sahibjeet Parmar, Director of Data Management & Research at The Life Raft Group.

Gaining Insight on the INSIGHT Phase 3 Study
2024-04-11 12:00
The Life Raft Group is partnering with Dr. Neeta Somaiah of MD Anderson Cancer Center to host "Gaining Insight on the Phase 3 INSIGHT Clinical Trial" for the GIST community on April 11th, 2024 from 12-1:15 pm ET. During the webinar, Dr. Somaiah will present an overview of Deciphera Pharmaceutical's Phase 3 INSIGHT Clinical Trial. This study tests the investigational use of ripretinib in a subset of patients living with GIST. Webinar participants will learn about the INSIGHT study, including eligibility, site locations, and study rationale. A Q & A session will follow the presentation.
Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician's guidance and care.
REGISTERAbout Our Presenter
Neeta Somaiah, MD
MD Anderson Cancer Center
Dr. Neeta Somaiah received her medical degree from Maulana Azad Medical College in New Delhi, India and has trained at St. John’s Episcopal in New York, Drexel University Hospital and Fox Chase Cancer Center in Philadelphia, prior to joining MD Anderson Cancer Center.
Dr. Somaiah joined MD Anderson Cancer Center in 2012. She has thirteen years of sarcoma and clinical research experience. She is board certified in Medical Oncology. Her primary clinical and research focus is soft tissue sarcomas, specifically liposarcomas and GIST. She currently serves as the Principal Investigator of three investigator-initiated trials and nine cooperative group and industry-sponsored clinical trials at MD Anderson Cancer Center and has in depth knowledge with extensive experience in the design and execution of clinical trials. She also has multiple ongoing collaborations for translational research, both retrospective and prospective, that help improve the understanding of these rare group of diseases and explore the role of immunotherapy as a therapeutic avenue. Dr. Somaiah has been presented many honors for her expertise and contributions to science, including an Exceptional Women in Medicine award and is among the top 1% providers nationally.
Thank you to our Webinar Sponsor!

Educate Yourself on GIST Research
2024-04-30 12:00
How to Educate Yourself on GIST Research – Searching the Web for GIST Science Publications
Life Raft Group Science Team Member Jim Hughes will present “How to Educate Yourself on GIST Research- Searching the Web for GIST Science Publications” to GIST patients & caregivers on April 30th, 2024 at 12pm ET. During this virtual presentation, Jim will outline the importance of patients and caregivers researching their cancer in order to best advocate for themselves. Jim will explain the importance of GIST publications and how to effectively do your own research, and how to work together with fellow community members to share research findings.
Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Jim Hughes
LRG Clinical Trials Database Coordinator/Science Team Member
Jim Hughes attended Kenyon College, Ohio and Loyola University, Chicago where he earned a BA in Philosophy. Between schools Jim served as an officer in the United States Army in the US and Vietnam and following his service worked in telecommunications for 35 years.
Jim and Margi are the parents of two children, Nancy and Jamie. Nancy Hughes Welsh was an early member of The Life Raft Group (2002). Nancy was diagnosed with leiomyosarcoma in 1991 at age 23. After ten years of surgery and chemotherapy Nancy was re-diagnosed with GIST in 2001. Nancy participated in the Phase Three imatinib trial in 2001 and the Phase Two sunitinib trial in 2003. Nancy’s GIST was eventually diagnosed as SDH epimutant and passed away in 2005.
Jim serves as a Life Raft Group Board Member, our Clinical Trials Database Coordinator and is a founding member of the LRG Science Team.

Thank you to our Webinar Sponsors!

GDOL Chicago 2024
2024-05-18 08:30 - 15:00 | Northwestern University Feinberg School of Medicine, Lurie Baldwin Auditorium, 303 East Superior Street, Chicago, IL, United States
GDOL Chicago is an in-person event and will be held at Northwestern University Feinberg School of Medicine, Lurie Baldwin Auditorium.
REGISTERWhat is a GDOL?
A GDOL is a GIST Day of Learning. This is a free one day event to help patients and caregivers learn more about this rare cancer, find support, and enhance their knowledge base to help them navigate their cancer journey.
The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward cures for rare diseases.
If you have any questions, please contact Diana Nieves at dnieves@liferaftgroup.org
Click image for a PDF of the Agenda:
Thank you to our Sponsors!

Demystifying Clinical Trials
2024-05-22 11:00
Insights from Experts and Participants
Join us May 22nd at 11am ET for an informative webinar presented by Dr. Candace Haddox of Dana-Farber Cancer Institute offering invaluable insights into the world of clinical trials in honor of International Clinical Trials Awareness Day. Dr. Haddox will delve into the fundamentals of clinical trials, discussing their significance, weighing the pros and cons of participation, and guiding attendees through the entire process, from initiation to conclusion. Following Dr. Haddox’s presentation, there will be an interactive discussion with GISTer Kandee Evans, currently enrolled in a clinical trial, offering firsthand experiences and perspectives. A Q&A session will follow the presentation.
Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenters

Dr. Candace Haddox
Dana-Farber Cancer Institute
Dr. Haddox is an Instructor in Medicine at Harvard Medical School, and a medical oncologist and clinical/translational investigator in the Sarcoma Center and the Center for Cancer Therapeutic Innovation at Dana-Farber Cancer Institute. Dr. Haddox’s research focuses on developing novel therapies rooted in sarcoma biology and determining mechanisms of treatment response and resistance, particularly in gastrointestinal stromal tumors (GIST).
Dr. Haddox received her Bachelor of Science in neurobiology from the University of Miami. She completed a post-baccalaureate research fellowship at the National Institutes of Health and received her Medical Degree from the University of South Florida. Dr. Haddox completed a residency in Internal Medicine at the Mayo Clinic in Rochester, Minnesota, and a fellowship in Medical Oncology at Duke University, where she also served as Chief Fellow. She joined the faculty at Dana-Farber Cancer Institute in 2021, where she currently sees patients with sarcomas and leads clinical trials in early drug development.

Kandee Evans
GIST Advocate
With a career spanning over three decades, Kandee Evans is a project management veteran who knows how to make things happen. After dedicating 30 years to her profession, Kandee recently left her job to focus on her health as a GIST survivor and warrior. Not one to back down from a challenge, she previously advocated fiercely for her oldest son when he was diagnosed with autism at just two years old. Now, as a devoted wife and mother of two amazing sons, Kandee continues to take on each day with grace, courage, and determination.
At the forefront of GIST research, Kandee is making a difference through participation. She enrolled in a clinical trial with the University of Miami in February 2024, she is helping test the effects of IDRX-42 under the direction of Dr. Jonathan Trent. Her selfless commitment will provide key insights and move science one step closer to finding a treatment for this devastating disease. Kandee’s courage underscores the power of individuals to advance medical progress through clinical trial involvement.
Thank you to our Webinar Sponsors!

Updates from ASCO
2024-06-18 19:00
The American Society of Clinical Oncology (ASCO) is an important conference in the oncology community where new scientific research updates are shared. The Life Raft Group is excited to partner with Dr. Herbert Loong, who will summarize abstracts and presentations that were presented during ASCO 2024 that are relevant to the GIST patient community. Join us June 18th at 7pm ET for this virtual presentation. A Q&A session will follow the presentation.
Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Dr. Herbert H. Loong
The Chinese University of Hong Kong
Dr. Herbert H. Loong holds conjoint appointments of Clinical Associate Professor in the Department of Clinical Oncology and Deputy Medical Director of the Phase 1 Clinical Trials Centre of The Chinese University of Hong Kong. He is also the current and founding convenor of the Prince of Wales Hospital Adult Sarcoma Multidisciplinary Team.
Dr. Loong has served or continues to serve in various capacities in various professional international oncology bodies, including the International Affairs Committee and the Asia-Pacific Regional Council of ASCO, the Membership, Education and Communications Committees of the IASLC. He has been elected as a Board Member of the Connective Tissue Oncology Society (CTOS) for 2022-2024. He is also a founding executive committee member of the newly formed Asia Pacific Oncology Drug Development Network (APODDC). He is also a Board Member in the specialty of Medical Oncology in the Hong Kong College of Physicians. In his appointment as a Registration Committee member of Pharmacy and Poisons Board of Hong Kong, he helps oversee the registration of medicinal products and clinical trials in the territory.
Thank you to our Webinar Sponsors!

GIST Awareness Day: A Focus on GIST Research
2024-07-12 12:00
July 13th, GIST Awareness Day, is a time when GIST experts, patients, and caregivers come together to educate the public about this disease and advocate for finding a cure. The Life Raft Group invites GIST patients and caregivers to celebrate GIST Awareness Day with us on July 12th at 12PM ET. During this virtual event, Dr. Matthew Hemming and PhD candidate Favour Akabogu of UMass Cancer Center will discuss exploring mechanisms driving GIST, treatment efficacy, and clinical outcomes, as well as the importance of patient involvement in rare disease research. An interactive Q&A segment will follow their presentations.

Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenters

Dr. Matthew Hemming
UMass Chan Medical School
Dr. Matthew Hemming is an assistant professor of medicine at UMass Chan Medical School, practicing sarcoma medical oncologist, and principal investigator of the SarcomaLab. He received his BS from UC San Diego, PhD from Harvard University, and MD from Harvard Medical School. He completed internal medicine residency at Massachusetts General Hospital and Hematology/Oncology fellowship at Dana-Farber Cancer Institute. He has focused his clinical practice and laboratory work on sarcoma and GIST, with the goal to improve diagnostic and treatment strategies through basic and translational research.

Favour Akabogu
PhD Candidate
Favour Akabogu is a PhD candidate in the SarcomaLab through the Morningside Graduate School of Biomedical Sciences at UMass Chan Medical School where she studies gastrointestinal stromal tumors (GIST) with a focus on identifying novel treatment options. She got her B.A in Biology at Berea College in Kentucky and worked as a Research Associate at Vanderbilt University where she investigated the role of Discodain Domain Receptors (DDRs) in the progression of acute kidney injury to kidney fibrosis. Additionally, she worked in collaboration with the CDC on understanding the household transmission respiratory disease particularly SARS-CoV2, RSV and Influenza. She is passionate about healthcare and drug discovery through scientific innovation. She loves traveling, dancing, and spending time with family and friends in her free time.
Thank you to our Webinar Sponsors!
