The Life Raft Group

Virtual GIST Patient Support Group
2024-06-18 18:00 - 19:30, 2024-07-02 18:00 - 19:30, 2024-07-16 18:00 - 19:30, 2024-08-06 18:00 - 19:30, 2024-08-20 18:00 - 19:30, 2024-09-03 18:00 - 19:30, 2024-09-17 18:00 - 19:30, 2024-10-01 18:00 - 19:30 (America/New_York) and 1 more date
The Patient Support Group meets via Zoom on the first and third Tuesday of each month from 6:00 PM – 7:30 PM ET (NYC Time).
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 participate.
Contact Brian Morello to join: bmorello@liferaftgroup.org

Updates from ASCO
2024-06-18 19:00 (America/New_York)
The American Society of Clinical Oncology (ASCO) is an important conference in the oncology community where new scientific research updates are shared. The Life Raft Group is excited to partner with Dr. Herbert Loong, who will summarize abstracts and presentations that were presented during ASCO 2024 that are relevant to the GIST patient community. Join us June 18th at 7pm ET for this virtual presentation. A Q&A session will follow the presentation.
Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Dr. Herbert H. Loong
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 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.
Thank you to our Webinar Sponsors!

Virtual GIST Caregiver Support Group
2024-07-03 13:00 - 14:00, 2024-08-07 13:00 - 14:00, 2024-09-04 13:00 - 14:00, 2024-10-02 13:00 - 14:00 (America/New_York)
Monthly Virtual Support Group for GIST Caregivers
Held on the first Wednesday of the month
LRG hosts a monthly virtual support group for the caregivers. We will share our stories, if you are comfortable, and speak freely about the new fears and anxieties we might be feeling during this journey as a caregiver. 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, concerns, successes and trials. All information shared will be kept confidential.
Contact Brian Morello to join: bmorello@liferaftgroup.org
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 Florida Support Group
2024-07-08 18:00, 2024-08-12 18:00, 2024-09-09 18:00, 2024-10-14 18:00 (America/New_York)
Florida Support Group
Zoom, 2nd Monday of the Month – 6pm ET
Our moderator is a fellow GISTER/LRG Member from Florida diagnosed with GIST in late 2016.
If you wish to attend, please email Brian Morello: bmorello@liferaftgroup.org for the Zoom link for the meeting.

GIST Awareness Day: A Focus on GIST Research
2024-07-12 12:00 (America/New_York)
July 13th, GIST Awareness Day, is a time when GIST experts, patients, and caregivers come together to educate the public about this disease and advocate for finding a cure. The Life Raft Group invites GIST patients and caregivers to celebrate GIST Awareness Day with us on July 12th at 12PM ET. During this virtual event, Dr. Matthew Hemming and PhD candidate Favour Akabogu of UMass Cancer Center will discuss exploring mechanisms driving GIST, treatment efficacy, and clinical outcomes, as well as the importance of patient involvement in rare disease research. An interactive Q&A segment will follow their presentations.

Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenters

Dr. Matthew Hemming
UMass Chan Medical School
Dr. Matthew Hemming is an assistant professor of medicine at UMass Chan Medical School, practicing sarcoma medical oncologist, and principal investigator of the SarcomaLab. He received his BS from UC San Diego, PhD from Harvard University, and MD from Harvard Medical School. He completed internal medicine residency at Massachusetts General Hospital and Hematology/Oncology fellowship at Dana-Farber Cancer Institute. He has focused his clinical practice and laboratory work on sarcoma and GIST, with the goal to improve diagnostic and treatment strategies through basic and translational research.

Favour Akabogu
PhD Candidate
Favour Akabogu is a PhD candidate in the SarcomaLab through the Morningside Graduate School of Biomedical Sciences at UMass Chan Medical School where she studies gastrointestinal stromal tumors (GIST) with a focus on identifying novel treatment options. She got her B.A in Biology at Berea College in Kentucky and worked as a Research Associate at Vanderbilt University where she investigated the role of Discodain Domain Receptors (DDRs) in the progression of acute kidney injury to kidney fibrosis. Additionally, she worked in collaboration with the CDC on understanding the household transmission respiratory disease particularly SARS-CoV2, RSV and Influenza. She is passionate about healthcare and drug discovery through scientific innovation. She loves traveling, dancing, and spending time with family and friends in her free time.
Thank you to our Webinar Sponsors!

Life Fest 2024 - San José
2024-07-19 - 2024-07-21 | Signia by Hilton San Jose, 170 S. Market St, San Jose, CA, United States
REGISTERLife Fest 2024 is July 19th – 21st in San José, CA!
Life Fest is a unique event where 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 2024 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 2024 will feature scientific presentations highlighting the newest research and the latest treatments.
View presentations & photo galleries of previous Life Fest events
Click image for a PDF of the Agenda:

Parking, Hotels & Flights
Parking for the conference location (Signia Hilton Hotel San Jose):
Valet parking from Reef Valet at the hotel is available for $47 overnight. Hourly parking rates are $20.00 for the first hour with $2.00 for each additional hour (not to exceed $47.00.
Alternate parking:
50 W San Fernando St Garage, (408) 283-5063
https://www.parkme.com/lot/22188/50-west-san-jose-ca

285 S Market St Parking Lot
https://www.parkvel.com/california/san-jose/285-s-market-st-parking/
For additional parking locations nearby and located in downtown: https://www.sanjose.org/trip-ideas/parking
Hotel Information
The LRG has secured two blocks of hotel rooms for guests stays at two price points.
These special group rates will be available until July 1, 2024.
Signia Hilton San Jose
170 S Market Street
San Jose, CA 95113
408-998-3975
Life Fest Group*

Rooms are available at the Hilton San Jose at a different price point. This hotel is within walking distance from our Life Fest conference site at the Signia.
These special group rates will be available until June 25, 2024.
Hilton San Jose
300 Almaden Boulevard
San Jose, CA 95110
408.947.4453
LIFE FEST (hilton.com)

Airline Discounts for Life Fest attendees:
Delta Air Lines is pleased to offer special discounts for The Life Raft Group.
Please click here to book your flights.
You may also call Delta Meeting Network® at 1.800.328.1111* Monday–Friday, 8:00 a.m. – 6:30 p.m. (EST) and refer to Meeting Event Code NM3GE*Please note there is not a service fee for reservations booked and ticketed via our reservation 800 number.

United Airlines is pleased to partner with The Life Raft Group for special discounts.
To make flight reservations, please click on discount code ZPCQ398065
– MileagePlus members earn valuable miles for their travel when using the Meetings discount code.
– You may also call United Meetings Reservation Desk Monday – Friday at (800) 426-1122 for booking assistance.
– Booking fees are waived for Meeting reservations.
– International customers may contact their local United Reservation Desk.

Donate to the Life Fest Scholarship Fund 2024
Any questions about Life Fest 2024?
Please reach out to Brian Morello, Director of Development, at bmorello@liferaftgroup.org
Our Sponsors:

GIST Do It Walk San José
2024-07-21 07:15 (America/New_York) | Signia by Hilton San Jose, 170 S. Market St, San Jose, CA, United States
Join us for this fundraising walk at Life Fest 2024 in San José, California, in memory of GISTer Ted Wolf!
Registration + T-shirt is a $40 donation. Additional T-shirts are a $25 donation per shirt.
REGISTER FOR WALK If you are not walking or want additional T-shirts, you can get T-shirts for $25 donation + shipping (per shirt), order here:
T-Shirt sizes are S, M, L, XL, 2XL, and 3XL.
Shirts are navy blue 50/50 cotton blend.

T-SHIRTS

Managing Side Effects of GIST Therapies
2024-08-19 12:00 (America/New_York)
The Life Raft Group has partnered with Mia Weiss, MD of Washington University School of Medicine in St. Louis to present “Managing Side Effects of GIST Therapies” to GIST patients and caretakers on August 19, 2024 at 12pm. During this virtual presentation, Dr. Weiss will provide an overview of GIST treatments and their side effects as well as home management for each type of symptom and when to call the clinic.

Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Dr. Mia Weiss
Washington University School of Medicine in St. Louis
Mia C. Weiss, M.D. is a medical oncologist with clinical interest in the care of patients with localized and metastatic soft tissue and bone sarcomas. She works collaboratively with pathologists, radiation oncologists, and orthopedic surgeons to assess, diagnose, and treat these complex malignancies. She is a member of the American College of Physicians, the American Society of Clinical Oncology, and the Connective Tissue Oncology Society. Her research interests include clinical trial development to assess efficacy of novel therapies in the treatment of metastatic sarcoma to ultimately improve patient survival and quality of life. She has particular interest related to genomics in sarcoma and finding ways to elucidate which patients are more likely to respond to targeted therapy and why some do not. Dr. Weiss has published several articles during her fellowship which most recently included a review on the use of Tazemetostat in epithelioid sarcoma, a novel epigenetic regulator and the first of its kind to be approved in a solid tumor. Additionally, Dr. Weiss has a strong interest in establishing a continuing medical educational program for community based primary care physicians and surgeons related to sarcoma and the importance of referring patients with soft tissue masses to an oncologic surgeon and ideally, a sarcoma center, to ensure optimal outcomes for patients. Dr. Weiss looks forward to continuing a career devoted to patient care, research, and education.
Thank you to our Webinar Sponsors!

Virtual Texas Support Group
2024-08-26 18:00, 2024-09-23 18:00, 2024-10-28 18:00 (America/Chicago)
Texas Support Group Zoom meeting on the 4th Monday of the month @ 6PM Central Time. Jackie Vanderpol will host this zoom meeting. Contact Rachel LoCurto at rlocurto@liferaftgroup.org with any questions or to get the Zoom link.

Locoregional Therapies for Treatment of GIST in the Liver
2024-09-09 12:00 (America/New_York)
Interventional radiology is a medical specialty that performs various minimally-invasive procedures to treat cancer and other diseases. The Life Raft Group invites world-renowned interventional radiologist Edward Kim, MD FSIR of Mount Sinai to present “Locoregional Therapies for Treatment of GIST in the Liver” on September 9th at 12pm ET. During this virtual presentation, Dr. Kim will describe various locoregional therapies and their appropriate uses, as well as the role of locoregional therapies and systemic therapy in treating GIST when it metastasizes in the liver. A Q&A portion will follow the presentation.

Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Dr. Edward Kim
Mount Sinai Medical Center
Edward Kim, MD FSIR is Professor of Radiology and Surgery and Director of Interventional Oncology at Mount Sinai Health Systems, under the Division of Interventional Radiology. He attended Rutgers Medical School and finished his Interventional Radiology training at Mount Sinai. Dr. Kim is a world-renowned Interventional Radiologist, who focuses on minimally invasive treatments, known as locoregional therapies, for the treatment of liver cancer. He has authored numerous influential peer reviewed publications and runs multiple prospective clinical trials. He has been invited to be course director and faculty at numerous meetings throughout the world. He believes that best patient care is achieved through a multidisciplinary collaboration and helps lead the multidisciplinary tumor board at Mount Sinai, as well as helped institute multidisciplinary office hours with liver transplant, hepatology and surgery. He is a thought leader in liver cancer, especially with regards to radioembolization, thermal ablation and chemoembolization, as well as combination therapies with immune checkpoint inhibitors.
Thank you to our Webinar Sponsors!

GDOL Ohio 2024
2024-09-14 08:00 (America/New_York) | The Ohio State University Wexner Medical Center, Biomedical Research Tower (BRT), 460 W 12th Ave, Columbus, OH, 43210, United States
GDOL Ohio is being held in-person at The Ohio State University Wexner Medical Center, Biomedical Research Tower (BRT), Room 115, Columbus, OH 43210.
REGISTRATIONWhat is a GDOL?
A GDOL is a GIST Day of Learning. This 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 is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward cures for rare diseases.
If you have any questions, please contact Brian Morello at bmorello@liferaftgroup.org
Click image for a PDF of the Agenda:

Thank you to our Sponsors!

GDOL Calgary
2024-09-28 09:00 - 17:00 (America/New_York)
REGISTRATION
Please join us for a full day GIST Day of Learning event in Calgary, Alberta on Saturday September 28, 2024.
Location: Hotel Alt East Village – 635 Confluence Way SE, Calgary, Canada
Refreshments and Lunch will be provided along with a post conference networking event!
Patients, caregivers and family are all welcome at this FREE event.
Speakers:
Dr. Xiolan Feng Medical Oncologist, Tom Baker Cancer Centre. Dr. Feng will be speaking about mutational analysis.
Dr. Andrew Blakely will joining us from the NIH National Cancer Institue to talk about his Surgical Trial.
Dr. Herbert Loong will be presenting on current clinical trials including the Cogent Biosciences PEAK Trial.
GIST 101 to be presented by David Josephy.
Living with the emotional impact of GIST group session with Kristin Austman.
Patient Panel led by Hazel McLeod.

IDRX-42: Trial Design & Emerging Data from StrateGIST 1
2024-10-07 13:00 (America/New_York)
The Life Raft Group invites you to “IDRX-42: Trial Design and Emerging Data from the StrateGIST 1 Study”, on October 7th, 2024 at 1PM ET. During this educational webinar, Suzanne George, MD of the Dana-Farber Cancer Institute will review emerging data from the first-in-human StrateGIST 1 trial of IDRX-42 in patients with advanced GIST. Dr. George will also discuss the design and rationale for the ongoing Phase 1b portion of the trial, including first- and second-line cohorts. A Q&A session will follow the presentation.

Please email srothschild@liferaftgroup.org to submit a question ahead of the presentation.

Please note that this webinar is not a substitute for your physician’s guidance and care.
REGISTERAbout Our Presenter

Dr. Suzanne George
Sarcoma Center at Dana-Farber Cancer Institute
Suzanne George, MD is the Division Chief of the Sarcoma Center at Dana-Farber Cancer Institute who leads a team focused on research and clinical care of patients with sarcomas and GIST. She has an extensive research experience in clinical trials and drug development and cares for patient from across New England, the US and internationally.
Thank you to our Webinar Sponsor!

GDOL Miami Virtual
2024-10-30
GDOL Miami is being held virtually with the GIST experts at Sylvester Comprehensive Cancer Center.
REGISTERWhat is a GDOL?
A GDOL is a GIST Day of Learning. This 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 is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare diseases, through patient-powered research, education and empowerment, and global advocacy efforts. Our vision is to empower a future fueled by data, guiding our journey toward cures for rare diseases.
If you have any questions, please contact Brian Morello at bmorello@liferaftgroup.org
Click Image for a PDF of the Agenda

Thank you to our Sponsors!
