The Life Raft Group

Virtual Caregiver Support Group
2021-02-10 13:00, 2021-02-17 13:00, 2021-02-24 13:00, 2021-03-03 13:00, 2021-03-10 13:00, 2021-03-17 13:00, 2021-03-24 13:00, 2021-03-31 13:00 (America/New_York) and 8 more dates
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.

LRG Webcast Series: hPPGL Syndrome - a Misnomer with Consequences
2021-02-11 12:00 (America/New_York)
Dr. Annes will review the hPPGL Syndrome with particular focus on the underlying genetics basis and related tumor risks. He will review the benefits/limitations of genetic testing and pre-symptomatic screening, including his personal experience directing Stanford’s Hereditary Neuroendocrine Neoplasia Clinic. Finally, he will discuss opportunities for advancing hPPGL care and ongoing research.
REGISTERPresenter:
Justin Annes, MD, PhD
Associate Professor, Stanford Department of Medicine
Dr. Annes is an Associate Professor in Stanford’s Department of Medicine and a Faculty Fellow in Stanford’s Chemistry, Engineering & Medicine for Human Health Institute (ChEM-H). He obtained his BS from Haverford College (1996), MD PHD from New York University (1996) and trained in Internal Medicine, Clinical Genetics and Chemical Biology at Brigham and Women’s Hospital / Harvard University (2011). Dr. Annes is director and founder of Stanford’s Hereditary Neuroendocrine Tumor Clinic (2012) which focuses on the longitudinal care of patients and families with inherited endocrine tumor syndromes, primarily hPPGL, MEN1 and MEN2. He participates in several neuroendocrine-focused patient advocacy / research foundations including The Pheo Para Alliance, Neuroendocrine Tumor Research Foundation and the NIH Pediatric Wildtype GIST Clinic. His NIH-funded research program is positioned at the interface of endocrine pathophysiology, synthetic chemistry and hereditary disease. The organizing principle of his research program is to harness the power of chemistry, human tissue samples and animal disease models to deliver fundamental biologic insights and develop novel therapeutic leads for the treatment of endocrine disorders.

Conversations with the LRG: GIST Mentors, Part 3
2021-02-18 14:00 (America/New_York)
Join us on Thursday, February 18th at 2pm ET for our next “Conversations with the LRG”. In this presentation, our GIST Mentors will discuss the role of the GIST Mentor and how one can assist you on your GIST journey.
You will learn why each of these patients/caregivers chose to volunteer as a GIST Mentor and more about them and their own journey with GIST.

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There will be a 15-minute Q & A at the end of the presentation.
You may submit questions in advance to Diana Nieves, Senior Director, Outreach & Engagement: dnieves@liferaftgroup.org.
You will also be able to submit questions during the presentation that will be answered at the end.

Finding Biomarkers that Cause GIST
2021-02-24 12:00 (America/New_York)
From Research to Clinical Application
Every GIST patient is unique based on their biology and what treatment to which they will potentially respond.
Dr. Lori Rink, Fox Chase Cancer Center, and Dr. Inga-Marie Schaefer, Brigham & Women’s Hospital, are two researchers who are making discoveries in their respective laboratories to uncover the unique biomarkers in GIST that will be future drug targets.
Dr. Margaret von Mehren, Fox Chase Cancer Center, will moderate the webinar and help the audience understand why these important discoveries in the lab are important to clinicians. This concept of translational medicine is an important field as it helps bring advances into the clinic that can directly impact the survival of GIST patients.
REGISTERAbout the Presenters
Lori Rink, PhD
Assistant Professor, Molecular Therapeutics, Fox Chase Cancer Center. Dr. Rink studied at the Biology at the University of Scranton and received her doctorate in for a Doctorate in Molecular Biology from Temple University followed by a post-doctoral fellowship at Fox Chase Cancer Center. She is an Assistant Professor in the Molecular Therapeutic program. Along with Dr. von Mehren, two graduate students, and a post-doctoral fellow, Dr. Rink’s lab is dedicated to investigating why some GIST patients eventually develop a resistance to Gleevec, discovering combinations of drugs that will attack GIST, and identifying markers that could predict how patients will respond to Gleevec.
Inga-Marie Schaefer, MD
Associate Pathologist, Brigham & Women’s Hospital, Instructor in Pathology, Harvard Medical School
Dr. Schaefer is an instructor at the Department of Pathology at Brigham and Women’s Hospital, Harvard Medical School in Boston, MA. After graduating with an M.D. degree from Georg-August-University Goettingen in Germany, she trained in Anatomic Pathology in Germany and at Brigham and Women’s Hospital. Her post-doctoral research in Dr. Jonathan Fletcher’s translational sarcoma laboratory focused on characterizing mechanisms of genomic progression in GIST/sarcoma, combining diagnostics, biology, and genetics. Dr. Schaefer is now evaluating mechanisms of incremental cell cycle dysregulation in GIST progression.

About the Moderator
Margaret von Mehren, MD
Associate Professor, Director of Sarcoma, Fox Chase Cancer Center
Dr. von Mehren matriculated at Georgetown University in Washington, DC, where she majored in Biology and minored in Philosophy, and graduating in 1985 with honors. She received her medical degree from Albany Medical College in Albany, NY. Dr. von Mehren completed an internship and residency at New York University Medical Center in New York before moving to Philadelphia for her fellowship in medical oncology at the Fox Chase Cancer Center and Temple University. After completing fellowship, Dr. von Mehren joined the faculty of the department of Medical Oncology at Fox Chase Cancer Center where she remains today as and Associate Professor and the director of the Sarcoma program. She is a member of the NCCN panel for soft tissue sarcomas and GIST task force, as well as the Intergroup GIST Task force. She also volunteers at the NIH Pediatric Wildtype GIST clinic biannually.

Virtual GISTer Support Group
2021-03-02 18:00 - 19:30, 2021-04-06 18:00 - 19:30, 2021-05-04 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

Living Well with GIST - Support Group for Women
2021-03-27 13:00 - 15:00 (America/New_York)
We are excited to announce the start of our new monthly support group, “Living Well with GIST – A Support Group for Women” (virtual) beginning Saturday, March 27 from 1 to 3PM ET. Led by GIST Mentor Kay Stolzer, the group will explore issues of interest to female GIST patients as they navigate their journey. Guest speakers will be invited to address issues that affect how having GIST impacts they way they think and feel about themselves.
The group will meet virtually on the last Saturday of every month.
Limited to 25 attendees – there will be a waitlist.
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'Let's Get the GIST of It' Series
2021-03-31 18:00 (America/New_York)
The Life Raft Group is excited to share our new initiative called“Let’s Get the GIST of It”. During this recurring online event, patients and caregivers can participate and share their overall experiences (good or bad) of their current treatment.

The goal of this initiative is to discuss key topics that will provide patients and caregivers with insight about their current treatment.We will discuss topics like side effects, dosages, scans, and support.You will also have the opportunity to interact and connect with patients like you that are taking the same drug or experiencing the same side effects.Big or small, all input is important and we would love for you to be part of this initiative.

If you or a loved one is currently taking Ayvakit or is looking to learn more about it, please register for this event.

The 3/31/21 meeting meeting topic will be AYVAKIT (avapritinib).

Date: 03/31/2021
Time: 6:00pm ET

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GIST & SDH-Deficient Support Group
2021-04-17 16:00 (America/New_York)
Please join us on Saturday, April 17th, at 1:00 p.m. PST/4:00pm EST. Just, make yourself comfortable at your computer, laptop, tablet, etc. and participate in what is going to be a very helpful and informative meeting.
The Life Raft Group is offering a virtual LRG Southern California GIST and SDH-Deficient GIST Support Group led by Southern California Leader Dina Wiley. The group will meet to talk to each other, discuss individual GIST issues, and get answers to questions. This will enable you to not only get some relief from the worry of GIST, but to also help others, as well. We are, after all, in the same life raft, and we are each needed to pull together. When we do, wonderful things happen!
We will have a very special participant — Jason Sicklick, MD, professor of surgery at UC San Diego School of Medicine and surgical oncologist at Moores Cancer Center at UC San Diego Health. Dr. Sicklick has been a key player in GIST research. Dr. Sicklick will be available to answer any questions you may have about GIST and SDH-Deficient GIST.
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Genetics of GIST
2021-04-29 12:00 - 13:00 (America/New_York)
Risks, Management, and What to Know for You and Your Family
In this webinar, we will review what is known about the hereditary causes behind GISTs, current genetic testing options and results, how this information affects screening and management, and implications for one’s family.

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Presenters:
Lindsay Kipnis received her MS in Genetic Counseling from Brandeis University in 2013. After graduating she worked in oncology at Women & Infants Hospital in Rhode Island. She joined the Center for Cancer Genetics and Prevention at DFCI in 2014. Lindsay is focused on ensuring that all ovarian cancer patients receive the genetic counseling and testing that is recommended. She also sees a variety of adult patients with personal and family histories of cancer.

Becca Vanderwall is a licensed and certified genetic counselor currently practicing at Dana-Farber Cancer Institute in the pediatric cancer genetics risk program. She previously worked in neurometabolics and mitochondrial disease at Boston Children’s Hospital. She earned her MS in Genetic Counseling and MPH in Public Health Genetics from the University of Pittsburgh in 2016. Her special interests include public health research and policy, health disparities and equity, hereditary brain tumor risk, and family dynamics and communication.

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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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.
