The Life Raft Group

Life Fest New Orleans
2022-07-29 - 2022-07-31
Life Fest New Orleans
July 29th-31st, 2022
If you have any questions regarding Life Fest, please email Jessica Nowak at jnowak@liferaftgroup.org
REGISTERLife Fest is a unique event where hundreds of patients and caregivers come together for a weekend to interact with each other and the medical and scientific communities that serve them. Faced with a rare form of cancer, GIST patients have a great need for information about this disease, particularly as the science evolves and our understanding reveals a complex set of subtypes of GIST, each responding differently to available treatments. Each year brings a wealth of new information, and patients are eager to learn about the latest treatments.
Life Fest workshops provide patients with emerging medical information, and they come away with a deeper knowledge of the disease, treatments, and side-effect management. They find hope in knowing the scientific community is working toward a cure, and hope is such a vital asset as they struggle day by day for survival.
The Life Raft Group emerged in recognition of the tremendous need for support in the GIST community. Life Fest 2022 will provide patients and caregivers with that support. Coming together with fellow patients from all walks of life from around the world is a meaningful and powerful experience.
In addition to our traditional educational workshops, Life Fest 2022 will feature scientific presentations highlighting the newest research and the latest treatments. Additionally, other disease advocacy groups will be invited to present the work of their organizations, and share lessons learned.
Reasons to attend Life Fest
Program Highlights
Where to Eat in NOLA
Sights & Sounds of NOLA
Click to view online and print agenda

Thank you to our Life Fest Sponsors!

Virtual Caregiver Support Group
2022-08-03 13:00 - 14:00, 2022-08-17 13:00 - 14:00, 2022-09-07 13:00 - 14:00, 2022-09-21 13:00 - 14:00, 2022-10-05 13:00 - 14:00, 2022-10-19 13:00 - 14:00, 2022-11-02 13:00 - 14:00, 2022-11-16 13:00 - 14:00 (America/New_York) and 5 more dates
A Bi-Weekly Virtual Support Group for GIST Caregivers
Held on the 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.

The Importance of Biomarker Testing
2022-08-12 12:00 - 13:00 (America/New_York)
August 12th, 12-1pm ET
The Life Raft Group is partnering with Dr. Michael Wagner from the University of Washington to present “The Importance of Biomarker Testing” to GIST patients and caregivers on August 12th, 2022 from 12pm-1pm EST. During this virtual presentation, Dr. Wagner will describe what biomarker testing is and how GIST patients can advocate for this test to ensure the best treatment for their specific cancer.
REGISTERAbout our Presenter:
Dr. Michael Wagner
University of Washington
Michael Wagner, MD is an Assistant Professor of Medicine at the University of Washington and an Assistant Professor in the Clinical Research Division at the Fred Hutchinson Cancer Research Center (FHCRC). He is the Director of Sarcoma Clinical Research. After graduating from Harvard University with a medical degree, Dr. Wagner completed his residency at Mt. Sinai Hospital in New York and medical oncology fellowship at the University of Texas MD Anderson Cancer Center. Dr. Wagner has received numerous awards, including the Conquer Cancer Foundation of ASCO Young Investigator Award and QuadW Foundation-AACR Fellowship for Clinical/Translational Research for his research on sarcoma. Dr. Wagner has been in his current position in Seattle since 2017.
Thank you to our 2022 LRG webinar sponsors:

Let's Get to the GIST of It!
2022-09-07 18:00 (America/New_York)
The Life Raft Group is excited host another “Let’s Get the GIST of It” session. During this recurring online event, patients and caregivers participate and share overall experiences (good or bad) of their current treatment. The topic of this installment is “The new and upcoming treatments in GIST.” We will be discussing two new clinical trials – Cogent (CGT9486) and Theseus (THE-630), as well as recently approved drugs like AYVAKIT (avapritinib) and QINLOCK (ripretinib).
The goal of this initiative is to discuss key topics that will provide patients and caregivers with insight about their current treatment, learn more information about new clinical trials or learn more about a new drug by listening to other people’s experiences. During this event, 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 who are taking the same drug or experiencing the same side effects. Big or small, all input is important and we are excited for you to be part of this initiative.
If you or a loved one is currently enrolled in a Cogent (CGT9486) and Theseus (THE-630) trial or currently taking ripretinib or avapritinib and would like to learn more about these drugs or share your experiences with other GISTers, please join this event. For more information or questions, please contact Sahibjeet Kaur at skaur@liferaftgroup.org
REGISTER

Florida Support Group
2022-09-12 18:00, 2022-10-10 18:00, 2022-11-14 18:00 (America/New_York)
Zoom, 2nd Monday of the Month – 6pm ET
Our moderator is a fellow GISTER/LRG Member, Jackie, from Orlando, Florida. She was diagnosed with GIST in late 2016. She is hopeful that this group will be helpful to GIST patients and their caregivers, who are also welcome to attend. This group will meet online every 2nd Monday of the month at 6pm ET.
If you wish to attend, please email Jackie at dillonjackie62@gmail.com for the Zoom link for the meeting.

The NIH Pediatric and Wildtype GIST Clinic
2022-09-14 - 2022-09-16 | NIH Pediatric and Wildtype GIST Clinic, Building10-CRC, Room 1-3750, Bethesda, 20892
The Pediatric and Wildtype GIST clinic at the National Institutes of Health (NIH) is a collaborative effort between clinicians, research scientists and advocates, who share the goal of helping young patients with Gastrointestinal Stromal Tumor.
Pending the status of the global COVID-19 pandemic, the 2022 GIST Clinic is scheduled for September 14-16, 2022. Now accepting applications.
Contact: CLINICAL RESEARCH NURSE: BJ Thomas, RN – ncipediatricgist@mail.nih.gov
REGISTER

GDOL San Diego
2022-09-24 08:30 (America/Los_Angeles) | Moores Cancer Center UC San Diego Health, Goldberg Auditorium, 3855 Health Sciences Drive, San Diego, CA, 92037, United States
GDOL San Diego is September 24th, 8:30 am
Life Raft Group GIST Do It Walk (Prepare for Miles for Merak) at 8:00 am (Registration at 7:30).
Breakfast 8:30, Event Start 9:00
A GIST Day of Learning (GDOL) 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 has a simple focus: to cure a form of cancer — GIST — and to help those living with it until then. To do this, the Life Raft Group focuses on three key areas: research, patient support & education, and advocacy, which lay the foundation of our mission to ensure the survival of GIST patients through a comprehensive approach connecting individual patients’ needs, the worldwide community of GIST advocates and the global health and research environment.
If you have any questions, please contact Diana Nieves at dnieves@liferaftgroup.org
REGISTERClick for PDF of Agenda

Thank you to our GDOL Sponsors:

The Emerging Role of Circulating Tumor DNA in GIST
2022-10-12 12:00 (America/New_York)
October 12, Noon ET
In this webinar, “The Emerging Role of Circulating Tumor DNA in Gastrointestinal Stromal Tumor”, Dr. Bialick will discuss recent data looking at treatment outcomes based off KIT resistant mutations identified by circulating tumor DNA in patients with GIST.
REGISTEROur Presenter
Steven Bialick, DO
Sylvester Comprehensive Cancer Center, Miami
Steve Bialick, DO, is a  hematology/oncology fellow at Jackson Memorial Hospital and the University of Miami/Sylvester Comprehensive Cancer Center in Miami, FL.  He completed his internal medicine residency within the University of Pennsylvania Health System before working as a hematologic malignancy hospitalist at the Hospital of the University of Pennsylvania in Philadelphia, PA.  He is now completing his oncology training with a focus on solid tumor malignancies, specifically soft tissue and bone sarcomas.  His research interests include hereditary cancer predisposition syndromes, circulating tumor DNA and its role in guiding targeted therapies, and the role of DNA damage repair pathways in sarcomas.
Thank you to our Sponsors:

So. Cal GISTer Virtual Support Group
2022-10-22 10:00 (America/Los_Angeles)
This Support Group will be held at 10am Pacific Time/1pm Eastern.
Join us on Saturday, October 22, at 10:00 am PST. 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, PhD. 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 guest – Dr. Adam Burgoyne, Moores Cancer Center, UCSD Health. He is currently involved with Temozolomide (TMZ) In Advanced Succinate Dehydrogenase (SDH)-Mutant/Deficient Gastrointestinal Stromal Tumor (GIST) clinical trial. Dr. Burgoyne 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 Our Special Guest:
Adam Burgoyne, MD, PhD
Moores Cancer Center, UCSD Health
Dr. Burgoyne, is a board-certified medical oncologist who specializes in diagnosing and treating primary liver cancers such as hepatocellular carcinoma (HCC). He also treats cancers of the esophagus, gallbladder, pancreas, stomach, small intestine, colon and appendix, as well as gastrointestinal stromal tumors (GIST).
Dr. Burgoyne uses many forms of therapy, including traditional chemotherapy, immunotherapy and targeted therapy, with an emphasis on personalized medicine, to offer the best possible patient outcomes. Dr. Burgoyne is the medical oncologist for UC San Diego Health’s multidisciplinary liver cancer clinic. The clinic offers patients highly specialized and coordinated care at one convenient location, ensuring easy and timely access to the best cancer doctors and the most innovative treatment approaches.
As a physician-scientist, Dr. Burgoyne also leads original research to improve survival rates among people with primary liver cancer and other cancers affecting the digestive system. In particular, he is working on developing novel drugs that inhibit multiple targets within the cancer cell with a single agent. He also studies tumor genetics and the biology of gastrointestinal stromal tumors (GIST) to facilitate personalize cancer care. His work has appeared in Journal of Translational Medicine, Molecular Cancer Therapeutics, and Cancer, among others.
Dr. Burgoyne completed a fellowship in hematology and oncology at UC San Diego School of Medicine, where he was chief fellow. He also completed a residency in internal medicine at UC San Diego School of Medicine. Dr. Burgoyne earned his medical degree and doctorate from Case Western Reserve University School of Medicine in Cleveland, Ohio. He is board-certified in internal medicine and medical oncology.
Dr. Burgoyne is a member of the American Association for Cancer Research, the American Association for the Study of Liver Diseases, the American Society of Hematology, and the American Society of Clinical Oncology. He is a member of the Alpha Omega Alpha Honor Medical Society.

GDOL Miami
2022-11-04 - 2022-11-05 | Gordon Center for Simulation & Innovation in Medical Education, 1120 NW 14th Street, Miami, FL, 33136, United States
GDOL Miami – November 4th & 5th – In person
A GIST Day of Learning (GDOL) 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 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
If you have any questions, please contact Diana Nieves at dnieves@liferaftgroup.org
REGISTERClick here for printable version of agenda

Thank you to our GDOL Sponsors:

Navigating Your Cancer Care
2022-11-07 12:00 (America/New_York)
Monday, November 7th at noon ET
Are you or a loved one currently dealing with a cancer diagnosis? Feeling lost in all the new terminology and decisions you are having to make? At Columbia Cancer, we know that being diagnosed with cancer can be overwhelming. We are here to help you navigate this challenging time.
In this webinar, you’ll hear from oncologists and people who have been where you are now. You will learn more about the full spectrum of cancer care, from diagnosis to survivorship, and have all of your questions answered.
CANCELLEDAbout the Presenters
Gary K. Schwartz, MD
Deputy Director, Columbia Cancer
Dr. Schwartz is a renowned medical oncologist specializing in rare cancers. Working for decades to bring innovative cancer treatments to patients, Dr. Schwartz holds unique insights into the questions and decisions you should consider before entering treatment.

Norman J. Scherzer
Executive Director Emeritus, The Life Raft Group
Norman Scherzer is Executive Director Emeritus and founder of The Life Raft Group, and a passionate advocate. The Life Raft Group is a global non-profit which empowers cancer patients to take control of their care through education and advocacy.

Surgical Considerations for GIST
2022-11-08 13:00 - 14:00 (America/New_York)
November 8, 2022 @ 1PM ET
The Life Raft Group is partnering with Dr. Andrew Blakely, surgical oncologist, National Cancer Institute, Center for Cancer Research, NIH, to discuss the basics of surgical removal of primary GISTs and considerations in multimetastatic disease. The presentation will include case examples for both non-wild-type and wild-type or SDH-deficient GIST. Q&A will follow the presentation.
If you have any questions about this webinar, please email srothschild@liferaftgroup.org
REGISTERAbout our Presenter:
Dr. Andrew Blakely
National Cancer Institute, Center for Cancer Research
National Institutes of Health
Dr. Blakely completed a Bachelor of Science in Biomedical Engineering followed by medical school at Drexel University. He went on to general surgery residency at Brown University. During residency, he spent two years of dedicated research time at the Center for Biomedical Engineering developing a device for tissue engineering applications. That work then led to a National Science Foundation grant and a patent. Dr. Blakely then completed his fellowship in Complex General Surgical Oncology at City of Hope National Medical Center. Dr. Blakely is currently a surgical oncologist specializing in peritoneal surface malignancies and soft tissue sarcomas. One of the primary focuses of his research includes improving surgical treatment and ex vivo tumor modeling of gastrointestinal stromal tumors.
Thank you to our 2022 LRG webinar sponsors:

Interactive Q&A with SDH Families
2022-12-08 17:00 (America/New_York)
December 8 @ 5PM ET
The Life Raft Group invites SDH-deficient GIST patients and caregivers to join us for a virtual conversation with Dr. Sosipatros Boikos of the Georgetown Lombardi Comprehensive Cancer Center. During this meeting, Dr. Boikos will present background on SDH-deficient GIST and open the meeting to an interactive Q&A with families. Please come prepared with questions and time to interact with the group!
REGISTERAbout our Presenter:
Dr. Sosipatros Boikos
Georgetown Lombardi Comprehensive Cancer Center
Sosipatros Boikos, MD, is a fellowship-trained, board-certified medical oncologist with clinical privileges at MedStar Washington Hospital Center and MedStar Georgetown University Hospital. He is one of the most experienced sarcoma medical oncologists in the Washington, D.C. metropolitan area, with 11 years of experience treating sarcomas and rare tumors and more than 20 years of experience in the area of sarcoma cancer genetics and cell biology. Dr. Boikos currently serves MedStar Health as Co-Leader of the Sarcoma Working Group at Georgetown Lombardi Comprehensive Cancer Center.
Thank you to our 2022 LRG webinar sponsors:

So. Cal GISTer Virtual Support Group
2022-12-10 10:00 (America/Los_Angeles)
This Support Group will be held at 10am Pacific Time/1pm Eastern.
Join us on Saturday, December 10, at 10:00 am PST. 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, PhD. 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 guest – Dr. Michael Heinrich, Oregon Health & Science University.
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 Our Special Guest:
Michael Heinrich, MD
Oregon Health & Science University
Professor of Medicine, School of Medicine
Cell and Developmental Biology Graduate Program, School of Medicine
Cancer Biology Graduate Program, School of Medicine
Program in Molecular and Cellular Biosciences, School of Medicine
Dr. Heinrich’s research includes both preclinical identification of novel molecular targets and testing of new agents in the laboratory and the clinic. This includes both genomics research using high-throughput gentoyping to identify oncogenic mutations and testing of new compounds in cellular and biochemical assays. Dr. Heinrich’s laboratory is particularly expert in the analysis of inhibitors of oncogenic receptor tyrosine kinases such as KIT, PDGFRA and FLT3.

La Senda Verde - Virtual Tour
2023-01-18 10:00 (America/New_York)
La Senda Verde Tour – January 18 at 10am ET

Our theme for 2023 is Thriving Together and during this time, we’ll present stories and featured webinars on how our patients & caregivers are thriving living with GIST. We want to celebrate these personal passions and joys with the desire to bring our community their own moments of joy and relaxation through these experiences.

La Senda Verde co-founders Vicky Ossio & Marcelo Levy
Caregiver Vicky Ossio shares her passion for rescuing and rehoming animals who were confiscated due to illegal trafficking and the destruction of their habitats. With co-founder Marcelo Levy, this sanctuary has sheltered hundreds of displaced animals and worked toward providing a diverse, natural setting through progressive conservation called rewilding.
Vicky came to know The Life Raft Group through her daughter Carolina, who was diagnosed with GIST in 2006 at age 27. She and Carolina have attended many Life Fest weekends and GDOLs and have been active volunteers with the LRG throughout the years.
REGISTERVicky and Marcelo will share a view of Senda Verde to our community on January 18th at 10am. Everyone is welcome to join and enjoy this presentation with a live Q&A to follow. During our tour, we will meet birds, reptiles, monkeys and other big mammals, like bears and big cats. We will also make a quick visit to our rewinding area to see the native stingless bees, and our butterfly farm.
Senda Verde was established in 2003 in the subtropical region east side of the Bolivian Andes in South America. Concerned about the urgent need to do something meaningful in favor of the natural world, Vicky and Marcelo decided to take hands-on action. They decided to devote their energy, effort and work to that noble and inspiring task: saving and sheltering wild animals rescued from illegal trafficking and destruction of habitats.
Senda Verde shelters approximately one thousand wild animals. This sanctuary exists to save and shelter animals rescued from illegal trafficking and destruction of habitats, and to inspire people to value nature. They have taken a progressive approach to conservation within our property and surrounding areas, letting natural processes enhance and reshape the land and restore degraded old agricultural landscapes.

GIST Updates from CTOS
2023-02-08 19:00 (America/New_York)
The Life Raft Group is partnering with Dr. Herbert Loong of The Chinese University of Hong Kong to present “GIST Updates from CTOS 2022” to GIST patients and caregivers on February 8th at 7pm ET. During this virtual presentation, Dr. Loong will discuss scientific updates relevant to GIST patients that were exhibited at the Connective Tissue Oncology Society (CTOS) conference. A Q&A segment will follow Dr. Loong’s presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter
Herbert H. Loong, MD
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 obtained his medical degree with a Distinction in Surgery from The University of Hong Kong in 2003. He has completed a Fellowship in Drug Development at Princess Margaret Cancer Centre in Toronto, Canada with a special focus on Experimental Therapeutics. His clinical and research interests also include Sarcoma Medical Oncology, Thoracic Oncology and Health Economics. He is a recipient of the European Cancer Congress Fellowship Grant (2013), the American Society of Clinical Oncology (ASCO) Annual Meeting Merit Award (2014), the Hong Kong College of Physicians Young Investigators’ Award (2014). Nominated by patients and their caregivers, Dr. Loong led the Lung Cancer Team at CUHK to be bestowed the IASLC Foundation Cancer Care Team Award in recognition for providing the best thoracic oncology care in “Asia & Rest of the World” in 2018.
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.
