The Life Raft Group

Conversations with the LRG: Long-Term Survivors
2021-05-04 14:00 (America/New_York)
Long-Term Survivors Share Their Stories & Advice on Living Well with GIST
May 4th at 2pm ET – Join us for a lively discussion with three long-term survivors, Erin McBean, John Abrams, and Dr. mOe Anderson. Diagnosed at different stages of life, with different mutations, these GISTers share how they have thrived with GIST over ten years and counting. This webinar will be moderated by Pete Knox, Senior Director of Research for the LRG, and will include a Q&A segment following the discussion. You may submit questions ahead of time to pknox@liferaftgroup.org or in the chat box during the event.
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Virtual GISTer Support Group
2021-05-04 18:00 - 19:30, 2021-06-01 18:00 - 19:30, 2021-07-06 18:00 - 19:30, 2021-08-03 18:00 - 19:30, 2021-09-07 18:00 - 19:30, 2021-10-05 18:00 - 19:30 (America/New_York)
The group will meet via Zoom on the first Tuesday of each month from 6:00 PM – 7:30 PM EST (NYC Time).
The group open to those who have not been able to participate in the past, for one reason or another. 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 be to participate.
Contact Diana Nieves to join: dnieves@liferaftgroup.org

Virtual Caregiver Support Group
2021-05-05 13:00, 2021-05-12 13:00, 2021-05-19 13:00, 2021-05-26 13:00, 2021-06-02 13:00 (America/New_York)
Weekly Support Group for GIST Caregivers.
Held every Wednesday at 1pm ET beginning January 20, 2021
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Every Wednesday at 1pm ET the LRG has a weekly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States, we will use an electronic platform, to come together every week as a group. We will talk about all the feelings you might be experiencing, both in relation to GIST, and COVID-19.
We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. 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 to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information.
Please email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.
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.

New Horizons GIST: Special Topic - Mutational Testing
2021-05-07 14:00 (Europe/Amsterdam)
This webinar is for all GIST patients around the world. Hosted by SPAEN (Sarcoma Patients EuroNet Association), this two hour New Horizons GIST presentation will focus on mutational testing in GIST as a guide for the right therapy.
This live online event will take place May 7th, 2021 at 2pm CET/8am ET.

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Management of Metastatic GIST
2021-05-12 12:00 - 13:00 (America/New_York)
What to Expect When a Tumor Has Spread
While surgery is the backbone of treatment for localized GIST, in the context of metastatic disease, treatment generally relies on medical therapy with tyrosine kinase inhibitors such as imatinib. Surgery is used predominantly to optimize their efficacy. This webinar will review options for therapy when patients are diagnosed with metastatic disease at the time of their initial diagnosis, during observation after initial resection of a GIST, and when metastatic GIST is resistant to imatinib. We will discuss the role that mutational status and drug toxicities may play in determining the optimal therapy for individual patients.
REGISTERAbout the Presenter:
Dr. Aimee Crago, Surgical Oncologist
Memorial Sloan Kettering Cancer Center
Dr. Crago earned her PhD at the University of Cambridge as a British Marshall Scholar and her MD in the Harvard-MIT Division of Health Sciences and Technology before training in surgery and surgical oncology at Georgetown University Medical Center and Memorial Sloan Kettering Cancer Center. She joined the MSKCC faculty in 2010 as member of the Gastric and Mixed Tumor Service and the Sarcoma Disease Management Team, and now serves as Associate Attending Surgeon. She is an active participant in the care of patients with soft tissue sarcoma, GIST and desmoid-type fibromatosis and coordinates a translational science research program that focuses on understanding the molecular drivers of sarcomas and how genomic aberrations in these tumors can inform patient care. Her work has been funded by the National Cancer Institute, the Food and Drug Administration, the American Society of Clinical Oncology, the American College of Surgeons, and the American Cancer Society among others. Dr. Crago is committed to educating others regarding sarcoma biology and patient care; as such, she trains clinical and research fellows at Memorial Sloan Kettering, is a Gerstner Sloan Kettering Graduate School Special Contributing Faculty Member, and works as chair of the Society for Surgical Oncology Sarcoma Disease Site Working Group.

New Treatment Updates for Advanced GIST
2021-05-24 12:00 (America/New_York)
During this webinar, Dr. William Tap will discuss newly approved treatment options as well as clinical trials for advanced GIST. Dr. Tap will explain how each of these drugs works to target mutations and when they are used for targeted treatment. A Q&A session will follow this presentation.
REGISTERAbout the Presenter
Dr. William D. Tap
Chief, Sarcoma Medical Oncology Service
Memorial Sloan Kettering Cancer Center
Dr. Tap is the Chief of the Sarcoma Medical Oncology Service at Memorial Sloan Kettering Cancer Center in New York. Bill has extensive experience in translational medicine and is currently in charge of the clinical, basic science, and translational aspects of the Sarcoma Medical Oncology Program at MSKCC. He is also helping to develop a comprehensive Adolescent and Young Adult Caner Program at MSKCC. Bill received his Medical Degree from Jefferson Medical College in Philadelphia, PA and performed his residency in Internal Medicine at the Vanderbilt University Medical Center in Nashville, TN and his fellowship in Hematology and Medical Oncology at the UCLA Medical Center in Los Angeles, CA. Bill also has a tremendous interest in global health care initiatives and effecting health disparities in underserved areas in the US and abroad.

Virtual Caregiver Support Group
2021-06-16 13:00 - 14:00 (America/New_York)
Weekly Support Group for GIST Caregivers.
Held first & third Wednesdays of the month
As we continue to navigate this uncertain time together, we want to offer you a little extra support. LRG has a twice monthly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States, we will use an electronic platform to gather as a group. We will talk about all the feelings you might be experiencing, both in relation to GIST, and COVID-19.
We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. 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 to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information.

Please email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.

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.

GDOL California 2021 - Virtual
2021-06-26 10:00 - 12:00 (America/Los_Angeles)
Join us virtually for GDOL California on June 26th at 10am Pacific Time.
Agenda:
Overview of GIST – Charles Forscher, M.D., Cedars-Sinai
Local Control For Primary and Disseminated GIST – Brian Kadera, M.D., UCLA
Novel Therapies and ctDNA in GIST – Mark Agulnik, M.D., City of Hope
Utilizing Immunotherapy To Treat GIST – Arun Singh, M.D., UCLA
SDH and GIST Research on Non-Cancer Cells – Jason Sicklick, M.D., UCSD
Q&A – all presenters
REGISTERVirtual GDOL California Sponsors:

What’s a GDOL? A GDOL is a GIST Day of Learning, a free one-day event to help you, as patients and caregivers, learn more about GIST, find support, and enhance your knowledge base to help you navigate your cancer journey. At a GDOL you will learn more about your disease from expert clinicians, researchers, and advocates and connect with other patients, caregivers, and family members who are also on this rare journey. You are not alone.
The mission of the Life Raft Group is to enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts. The LRG vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients. To accomplish this, we rely on four key pillars;

Leverage the patient perspective to drive innovative solutions in cancer research
Educate and empower patients to take a larger role in their care
Accelerate research outcomes through collaborative efforts
Increase access to effective treatments worldwide

See what a GDOL can offer you – visit this link to see presentations, photos, and posts about past GDOLs:

View Past GDOLs

For questions or more information about GDOL, Diana Nieves, Senior Director, Outreach & Engagement, DNieves@liferaftgroup.org

Virtual Caregiver Support Group
2021-07-07 13:00 - 14:00, 2021-08-04 13:00 - 14:00, 2021-08-18 13:00 - 14:00, 2021-09-01 13:00 - 14:00, 2021-09-15 13:00 - 14:00 (America/New_York)
Bi-Weekly Support Group for GIST Caregivers.
Held first & third Wednesdays of the month
As we continue to navigate this uncertain time together, we want to offer you a little extra support. LRG has a twice monthly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States, we will use an electronic platform to gather as a group. We will talk about all the feelings you might be experiencing, both in relation to GIST, and COVID-19.
We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. 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 to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information.

Please email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.

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.

GIST Awareness Day - Live Q&A with SDH Experts
2021-07-13 12:00 (America/New_York)
Join us this GIST Awareness Day, July 13th, as our esteemed panel of GIST experts (from our Pediatric & SDH-Deficient GIST Consortium) answers your questions about SDH-deficient GIST. You can email your prepared questions to Sara Rothschild at srothschild@liferaftgroup.org or type them into the chat feature the day of the webinar. We will get to as many questions as possible during the event.
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POSTPONED: Conversations with the LRG: GIST Mentors
2021-07-15 13:00 (America/New_York)
POSTPONED – NEW DATE TBD
On Thursday, July 15th at 1pm ET, we are presenting another session of “Conversations with the LRG”. In this presentation, another group of GIST Mentors will discuss the role of the Mentor and how one can assist you on your GIST journey. Learn more about why each of these patients/caregivers volunteer as a GIST Mentor and learn more about their personal journeys with GIST. There will be a 15-minute Q & A at the end of the presentation.
You can submit question were in advance to Mary Garland, Communications Director: mgarland@liferaftgroup.org. Questions can also be submitted during the presentation.
REGISTER

Virtual Caregiver Support Group
2021-07-21 13:00 - 14:00 (America/New_York)
Bi-Weekly Support Group for GIST Caregivers.
Held first & third Wednesdays of the month
As we continue to navigate this uncertain time together, we want to offer you a little extra support. LRG has a twice monthly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. To continue social distancing and connecting with caregivers across the United States, we will use an electronic platform to gather as a group. We will talk about all the feelings you might be experiencing, both in relation to GIST, and COVID-19.
We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling because of this unprecedented time. 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 to get us through this stressful time. All information shared will be kept confidential. Contact Diana Nieves at dnieves@liferaftgroup.org for more information.

Please email Diana Nieves at dnieves@liferaftgroup.org to join this meeting.

About the Group Leader:
Marlene Nei, GIST CaregiverAs 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.

New Member Orientation - Virtual
2021-08-05 08:00, 2021-08-05 12:00, 2021-09-02 08:00, 2021-09-02 12:00 (America/New_York)
This meeting will take place at 8am & 12pm ET every 1st Thursday.
Are you a new LRG member and looking for guidance on all the things the Life Raft Group has to offer? Join us for a virtual orientation to hear from staff about our services and have the opportunity to ask questions and meet other new members.
Sign Up For Meeting Date

What GISTers Need to Know About Clinical Trials
2021-08-12 12:00 (America/New_York)
Clinical Trials 101, a GISTory of Clinical Trials, & How to Talk to Your Medical Team about Clinical Trials
Clinical trials are an essential tool of modern medicine. We have heard a lot about clinical trials of COVID-19 vaccines and therapies during the pandemic, and most GISTers are aware that clinical trials established the effectiveness of drugs like imatinib. However, beyond the headlines there’s a lot to consider when evaluating a clinical trial – especially if you are considering enrolling in one. Who designed the trial? Who approved it? Who is paying for it? Who decides which patients will be enrolled? How will the results be evaluated? And what’s the relationship between clinical trials and “real world evidence”?
Please join LRG Science Team members Jim Hughes and David Josephy for an informative presentation on the topic of clinical trials.
REGISTERAbout the Presenters:

Dr. David Josephy

David Josephy, PhD.
President of Life Raft Group Canada
David Josephy was a Professor of Molecular and Cellular Biology at the University of Guelph in Ontario, Canada, until his recent retirement. He authored a textbook titled, “Molecular Toxicology”, and has written more than 100 scientific publications in biochemistry, toxicology, and cancer research.

Jim Hughes
Jim Hughes
Life Raft Group Clinical Trials Coordinator
Jim Hughes attended Kenyon College and Loyola University, Chicago where he earned a BA in Philosophy. Between schools Jim served three years as an enlisted man and officer in the United States Army in the US and Vietnam. Jim retired from the telecommunications industry after a 35-year career including positions in engineering, long-range planning, and marketing. Jim and Margi are the parents of two children Nancy and Jamie. Nancy Hughes Welsh (1967-2005) 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. Jim and Margi continue to facilitate the LRG Chicago chapter meetings. Jim serves on the Board of the LRG and is a member of the LRG Science Team.
