Virtual GISTer Support Group
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, 2021-11-02 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
2021-06-02 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.

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, 2021-10-06 13:00 - 14:00, 2021-10-20 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.
REGISTER

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, 2021-10-07 08:00, 2021-10-07 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.

Conversations with the LRG: Meet our International GIST Mentors!
2021-10-07 14:00 (America/New_York)
Join us Thursday, October 7th at 2pm ET for our next “Conversations with the LRG”. In this presentation, our Global 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.
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 of Outreach and Engagement: dnieves@liferaftgroup.org
You will also be able to submit questions in the chat feature during the presentation for the Q&A.
REGISTER

New Horizons GIST Conference
2021-10-20 - 2021-10-22
The New Horizons GIST conference will once again be held virtually, due to the ongoing covid-19 pandemic, and this year will welcome GIST advocates as well as patients & caregivers.
New Horizons GIST traditionally focuses on a large annual conference gathering over 50 representatives from 30 countries to discuss critical information about GIST that impacts the global GIST patient and medical communities. Participants have opportunities to interact with leading GIST experts, learn new medical and scientific information about GIST, exchange best practices and discuss advocacy issues.
On behalf of the NEW HORIZONS GIST Steering Committee, the Life Raft Group is very pleased to invite you to the New Horizons GIST 2021 Conference from October 20-22, 2021 via Zoom.
The theme is “Celebrating 20 Years of GIST Treatments.” Over the course of the three day conference, we will travel along the 20-year treatment journey of GIST and look towards the future. Day one will be the Kickoff Celebration in which we discuss the birth of targeted medicine. Day Two will focus on current targeted therapies, and Day Three will end with the future outlook and important research questions needing to be addressed by the global GIST community. Each day will have virtual sessions between 9:00 am to 12:00 pm Eastern Time.
This meeting will be a great opportunity to come together and reflect upon the past 20 years but also look towards the future as a global community. Each organization is welcome to register several representatives.
If you have any questions about this conference, please email: srothschild@liferaftgroup.org
REGISTERProposed Agenda: (updated 10.8.2021)
pdf here
October 20

October 21

October 22

See past New Horizon GIST conferences

Perspectives in Biomarker Testing
2021-10-28 13:00 (America/New_York)
Who Are the “Players” Involved in Biomarker Testing?
Hear Their Perspectives
Understanding the role of mutations and biomarker testing in GIST is one of most important things that GIST patients need to learn. Knowing the driving force behind each individual’s tumors is not just important, it is critical in determining the most effective treatment for your mutation. Whether it is a pathologist, an oncologist, or the laboratory doing the testing, they each play a key role in the testing process. Learn from different perspectives and ask questions to this distinguished panel of experts.

If you have questions about this presentation
or about registration, please contact:
Sara Rothschild, VP Program Services, srothschild@liferaftgroup.org
REGISTEROur Presenters

Jonathan Trent, MD, PhD
Director, Sarcoma Oncology
Sylvester Comprehensive Cancer Center
Miami, Florida
Dr. Jonathan C. Trent is currently the Associate Director for Clinical Research, the Director of the Bone and Soft-tissue Sarcoma Group at the Sylvester Comprehensive Cancer Center. Dr. Trent’s interests are in the clinical and translational research of sarcomas, direct care of sarcoma patients, and education about sarcoma. As Associate Director for Clinical Research, his goal is to help Sylvester Faculty develop clinical trials that provide clinically effective and scientifically exciting therapy to cancer patients of South Florida and beyond. The major focus of his clinical, educational and research efforts are with gastrointestinal stromal tumor (GIST), chondrosarcoma, and other sarcomas. The major efforts of Dr. Trent’s research focus on understanding the mechanisms of action and resistance of imatinib in GIST and other sarcomas while striving toward improved therapeutic options. His work involves the use of novel preoperative/postoperative clinical trials, prospectively acquired tumor tissue, cell lines, archival tissue, as well as collaborations with disciplines such as the genomics facility, surgical oncology, pathology, radiology and interventional radiology.

Leylah Drusbosky, PhD
Medical Science Liaison
Guardant Health
Tampa, Florida
Leylah Drusbosky received her PhD in molecular biology from the University of Florida and has expertise in next generation sequencing, liquid biopsy, precision medicine, and translational research. She is a Medical Science Liaison at Guardant Health, a company that leverages liquid biopsy to guide personalized treatments in patients with advanced cancer and has a passion for communicating the need for comprehensive genomic profiling to identify the best treatment approach based on each patient’s unique disease biology.

Keith Killian, PhD
Senior Pathologist & Associate Medical Director
Foundation Medicine
Cambridge, Massachusetts
Dr. Killian is Senior Pathologist and Associate Medical Director at Foundation Medicine. He also serves as the lead pathologist on the partnership with Genentech to develop comprehensive gene expression profiling assays for clinical trial use. Notable prior translational medicine achievements include working with clinicians from the NIH Pediatric Gastrointestinal Stromal Tumor (GIST) clinic to discover the bimodal molecular pathologic mechanism of GIST tumorigenesis, whereby reciprocal epigenetic and genetic inactivation of succinate dehydrogenase (SDH) explain SDH deficiency in KIT/kinase-WT GIST. Other recent work includes the methyl-deviation index (MDI) as a prognostic marker in breast cancer; MDI can be more generally used to measure malignant cellularity, including lineage and purity, in routine biopsies. We also recently discovered the remarkable convergence of epigenomic programming in pluripotent stem cells and germ-cell-tumor cells. Then, we are completing a study of the clinical utility of saliva in the molecular profiling of solid and hematologic malignancy.

Thank you to our sponsors!

Caring for the Caregiver
2021-11-02 12:00 (America/New_York)
Caring for the Caregiver will focus on common challenges caregivers experience and how these challenges can often lead to burnout, while also highlighting the impact of COVID-19. This webinar will provide caregivers with tools and ideas to help improve their physical and emotional wellbeing. To close, caregivers will be given the opportunity to engage in a self-care practice that is quick enough to integrate into their routine.
REGISTEROur Presenter

Alyson Erardy, LMSW, Oncology Social Worker
Alyson is an oncology social worker at CancerCare providing emotional and practical support services to people affected by cancer. During her time at CancerCare, Alyson has developed a passion and expertise in working with the caregiver population by creating new workshops, programs and groups to create a strong community.
