The Life Raft Group

LRG Webcast: Genetics 101
2020-10-20 12:00 (America/New_York)
With the alphabet soup of terms and genes that cancer patients tend to hear during diagnosis, it takes some time to really understand what these terms mean.
In her Genetics 101 webcast, Dr. Raygada will unravel the DNA terms and seek to empower patients by helping them understand the genetic basis of their conditions so that they may decrease the risks associated with the mutations and tumors they carry.
REGISTERAbout the presenter
Margarita Raygada, PhD, Oncology Genetic Counselor
Dr. Raygada’s doctorate degree is in Medical Science from the Uniformed Services University of the Health Sciences/Naval Hospital, Bethesda, Maryland. Her Master’s degree is in Human Genetics and Genetic Counseling, Georgetown University Hospital (GUH) in Washington, D.C., with two post-doctoral fellowships: Molecular Biology at The Johns Hopkins Hospital in Baltimore, and Cancer Genetics at GUH. Research Focus: Cancer genetics is my passion. I am interested in delineating the genetic changes in rare tumors and identifying associated phenotypes that may lead to common pathways and therefore improved outcomes for cancer patients. But most importantly I hope to empower patients by helping them understand the genetic basis of their conditions, and by educating them on how they can use this information to manage their cancer so that they may decrease the risks associated with the mutations and tumors they carry.

Women in Sarcoma: Case Presentations
2020-10-26 12:00 (America/New_York)
Case Presentations
October 26, 12PM ET
Please join us for the second webcast of our Women in Sarcoma series. The Life Raft Group has developed the Women in Sarcoma program in recognition of the many women sarcoma specialists that engage with the sarcoma patient community and focus on educating and advocating on behalf of those living with sarcoma.
This panel features three women sarcoma experts presenting unique case studies that they have encountered in their practices. Panelists will interact with each other about these case studies, and participants will gain meaningful insight into how these experts diagnose and treat sarcoma patients, and how they collaborate with colleagues toward the goal of achieving positive outcomes for these challenging cases.

If you have questions about this panel or about registration, please contact Sara Rothschild, VP Program Services

Please join us for this interactive session with women leading the field of sarcoma!

REGISTEROur Panel of Experts

Vaia Florou, MD
Oncologist
University of Utah
Huntsman Cancer Center

Ciara Kelly, MBBCh BAO
Oncologist
Memorial Sloan Kettering
Cancer Center

Sandra R. Brackert, NP
Nurse Practitioner
Ronald Reagan UCLA
Medical Center

Virtual Caregiver Support Group
2020-11-04 13:00 (America/New_York)
This is an Eight-Week Support Group for GIST Caregivers.
Held every Thursday starting September 2 at 1pm ET.
Limited to 12 participants.
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, November 4th at 1pm ET the LRG will have its own weekly support group for the caregivers facilitated by Marlene Nei, GIST Caregiver. In an effort to continue social distancing, we will use an electronic platform, to come together for 8 consecutive weeks as a small group of 10 participants. We will talk about all of the feelings you might be experiencing, both in relation to GIST, and also COVID-19. We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling as a result 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.
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.
Register

Virtual GISTer Support Group
2020-11-11 17:00 (America/New_York)
As we continue to navigate this uncertain time together, we want to offer you a little extra support. Starting Wednesday, November 4th, at 5pm ET, the LRG will have its own weekly support group for people living with GIST facilitated by social worker Chelsea Madia. In an effort to continue social distancing, we will use an electronic platform, to come together for eight (8) consecutive weeks as a small group of 10 participants.
We will talk about all of the feelings you might be experiencing, both in relation to GIST, and also COVID-19. We will share our GISTories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling as a result of this unprecedented time. The group will be a safe space not only to feel supported by your fellow GIST survivors but also a place to share our own coping mechanisms to get us through this stressful time. All information shared will be kept confidential.

REGISTER
About the Group Leaders:
Chelsea Madia, LCSW
Chelsea is a licensed clinical social worker in New York, who started in the field in 2011 counseling at-risk teens at the Child Center of New York in Jamaica, Queens. After this, her work took her to the Coalition for the Homeless in lower Manhattan, where she supported mentally ill homeless adults in their quest to move into supportive housing, as well as apply for disability benefits. From there, she worked for nine months on the Psychiatric Mobile Crisis Team at Mount Sinai Beth Israel, before being promoted to Program Manager. In November of 2018, after three years managing the team, Chelsea was diagnosed with metastatic GIST. Since that time, she has been stable on Gleevec, and now is in the early phases of starting her own private counseling practice in New Rochelle, NY.

Virtual Caregiver Support Group
2021-01-20 13:00, 2021-01-27 13:00, 2021-02-03 13:00, 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 (America/New_York) and 7 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.

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

Australian GISTers Virtual Meet & Greet
2021-02-05 11:00 (Australia/Melbourne)
Please be aware of the time difference: This webinar takes place on Feb 4th at 7pm ET for the US and Feb 5th at 11 am Melbourne time.)
Please join us for a Virtual Meet & Greet with our new Australian GIST Representatives Shari Reid and Amy Kenworthy! GIST patients and family members are welcome to join this virtual get together to connect as well as meet one of the leading GIST experts in Australia – Dr. John Zalcberg from Monash University.
REGISTERPresenters
Shari Reid, Victoria
Shari Reid, formerly a Systems Administrator in Health & Safety, is currently a proud, full-time mum to son Robbie. Though she’s living in regional Victoria with her husband, Glenn, and son, Shari was born in the U.S. and her family moved to Australia when she was a baby.

Amy Kenworthy, Gold Coast
Professor Amy Kenworthy, also born in the U.S., was raised in Massachusetts and immigrated to Queensland, Australia, after finishing her PhD in 1999. She and her husband, George, are both professors at Bond University on the Gold Coast. They have two teens, Bryce, 13, and Mariel, 17.

Read more about these amazing GISTers!

Dr. John Zalcberg
Professor Zalcberg is currently the Head of the Cancer Research Program as well as NHMRC (MRFF) Practitioner Fellow in the School of Public Health and Preventive Medicine at Monash University – currently overseeing the establishment and activities of clinical quality registries across various tumour types. He is also the inaugural Tony Charlton Chair of Oncology at Alfred Health as well.
You can view this presentation on OncLive – Dr. Zalcberg on the Management of Patients With GIST

California GISTer Virtual Support Group
2021-02-06 16:00 (America/New_York)
This Support Group will be held at 1pm Pacific Time/4pm ET.
Join us on Saturday, February 6, at 1:00 p.m. PST/4:00pm EST. Make yourself comfortable at your computer, laptop, tablet, etc. and participate in what will be a very helpful and informative meeting.
The Life Raft Group is offering a virtual California Support Group with 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!
And here’s the best part — we will have a very special participant — Dr. Michael Heinrich, Professor of Medicine at the Knight Cancer Institute of the Oregon Health & Science University. Dr Heinrich was a key player in the original Gleevec research. And, as new mutations of GIST are found he has continued his research resulting in new and better drugs that attack GIST where Gleevec cannot. Dr. Heinrich will be available to answer any questions you may have, and explain some of the mysteries of GIST.
REGISTERAbout the Group Leader:
Dina Wiley – Dina is a long-time Southern California LRG Support Group Leader. Read about Dina’s GIST journey here
About the Special Guest:
Michael Heinrich, M.D.
Professor of Medicine and Cell/Developmental Biology
OHSU School of Medicine
Dr. Heinrich earned his medical degree from Johns Hopkins School of Medicine in Baltimore and completed both his residency training and fellowship in hematology/medical oncology at OHSU.
Dr. Heinrich’s research, like much of the work at the Knight Cancer Institute, revolves around a basic, yet complex premise. You have to understand what is broken in order to fix it. That’s why Dr. Heinrich is intently focused on identifying the molecular targets that cause cancer, which is essential to the development of better and less toxic therapies. He is recognized internationally for groundbreaking research discoveries that have improved care for patients with gastrointestinal stromal tumors, and his research has implications for many types of cancer.
Listen to Dr. Heinrich’s most recent webinar for the LRG.

Disclaimer: Information provided in this webcast is not intended as a substitute for your physician’s guidance and care.

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.

REGISTER

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.

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.
REGISTER

'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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