The Life Raft Group

Virtual North Carolina Patient Support Group
2026-04-28 14:00, 2026-06-30 14:00 (America/New_York)
North Carolina Patient Support Group
Zoom, Last Tuesday of the Month – 2pm ET
February, April, June, August, October, December

If you wish to attend, please email supportgroups@liferaftgroup.org for the Zoom link for the meeting.

Virtual GIST Patient Support Group
2026-05-05 18:00 - 19:30, 2026-06-02 18:00 - 19:30, 2026-07-07 18:00 - 19:30, 2026-08-04 18:00 - 19:30 (America/New_York)
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.
If you wish to attend, please email supportgroups@liferaftgroup.org for the Zoom link for the meeting.

Virtual GIST Caregiver Support Group
2026-05-06 13:00 - 14:00, 2026-06-03 13:00 - 14:00, 2026-07-01 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.
If you wish to attend, please email supportgroups@liferaftgroup.org for the Zoom link for the 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 Florida Support Group
2026-05-11 18:00, 2026-06-08 18:00, 2026-07-13 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 supportgroups@liferaftgroup.org for the Zoom link for the meeting.

SDH Support Group
2026-05-19 15:00, 2026-06-16 15:00, 2026-07-21 15:00 (America/New_York)
We are excited to announce the launch of a dedicated Support Group for SDH-GIST patients, created to offer a welcoming space for connection, understanding, and shared experience. Whether you’re newly diagnosed or have been managing SDH for years, this group is here to support you. Together, we will share our stories and knowledge, discuss challenges, celebrate progress, and offer encouragement to one another in a safe, respectful environment.
What to Expect:

Regular virtual meetings
Peer support and open discussion
Guest speakers and educational sessions
Opportunities to ask questions and share your story

This group will meet the 3rd Tuesdays of the month. Space is limited as we aim to keep the support groups small to allow for sharing & discussion. If interested in the group, please contact Becky Owens at bowens@liferaftgroup.org. A registration link will be sent to those who express interest. You are not alone, and we hope this group becomes a meaningful part of your life.

Virtual GIST Patient Support Group
2026-05-19 18:00 - 19:30, 2026-06-16 18:00 - 19:30, 2026-07-21 18:00 - 19:30 (America/New_York)
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.
If you wish to attend, please email supportgroups@liferaftgroup.org

What It Means to Join a Clinical Trial
2026-05-21 12:00 (America/New_York)
REGISTERHosted by The Life Raft Group, join us on May 21 at 12 PM ET for a candid, informative conversation about stepping into a clinical trial. Rashmi Chugh, MD of University of Michigan Rogel Comprehensive Cancer Center will present how clinical trials work, who they’re for, and what you can really expect and Dirk Niggemeyer, GIST patient, will share his personal journey navigating two clinical trials.
Whether you’re newly diagnosed, exploring new treatment options, or simply want to better understand clinical trials, this session will help you make more informed decisions with confidence.
These webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes.
About Our Presenters:

Dr. Rashmi Chugh
University of Michigan Rogel Comprehensive Cancer Center

Dr. Rashmi Chugh is a Professor of Internal Medicine in the Division of Hematology/Oncology at the University of Michigan Rogel Comprehensive Cancer Center, Associate Division Chief of Clinical Services of Hematology/Oncology, and Sarcoma Clinical Research Team Co-Leader. Her clinical practice is focused on the care of patients with bone and soft tissue sarcoma including gastrointestinal stromal tumors. Dr. Chugh’s research involves conducting early and late phase clinical trials of novel therapies alone or in combination with a goal to advance the care of sarcoma patients. She also is Medical Co-Director of the Michigan Adolescent and Young Adult (AYA) Oncology Program and has a particular interest in the care and research surrounding the unique challenges this population faces.

Dirk Niggemeyer
Patient Advocate

Dirk Niggemeyer was diagnosed with GIST (KIT Exon 11) in July 2018 when he went from Engineering Manager and youth soccer coach to palliative care patient overnight. He continued working until late 2021. Dirk has participated in two medical studies: For 15 months, he was in the control group in the Phase 3 Sutent vs Qinlock study, and he has been participating in the IDRX-42 Phase 1b study for the last 22 months.
Thank You to Our Sponsors:

Virtual Texas Support Group
2026-05-25 18:00, 2026-06-22 18:00, 2026-07-27 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.
If you wish to attend, please email supportgroups@liferaftgroup.org for the Zoom link for the meeting.

Understanding GIST/Role of Clinical Trials
2026-05-30 13:00 (America/New_York)
REGISTERGIST Sarcoma Life Raft Group Canada is holding an Online Only event on
Saturday May 30th, 2026 at 1:00pm.
We will be sharing our perspective on Understanding GIST and The Role of Clinical Trials.

We will be presenting an updated GIST 101 with David Josephy. We will also be reviewing how to navigate the Clinical Trials website and when to consider a trial with Gabriel Melkonian. We will also hear from our member – Robert Kirschman who has participated in clinical trials during his journey to share his experience.

Expert Nutrition & Exercise Advice
2026-06-01 12:00 (America/New_York)
REGISTERHosted by The Life Raft Group, join us in honor of National Cancer Survivors Month for an empowering and informative webinar, “Expert Nutrition & Exercise Advice for Sarcoma Patients” taking place on June 1st at 12 PM ET.
This special session will feature Dr. Loren Yavelberg, Post-Doctoral Associate, CEP, ACSM-ACS Exercise Oncology Specialist, and Dr. Harleen Kaur, a behavioral scientist with a PhD in Nutrition Sciences, both from the University of Miami.
Together, they will share practical, evidence-based guidance on how to support your body through every stage of the cancer journey. From preparing for surgery to rebuilding strength afterward, the discussion will explore the role of nutrition, physical activity, and overall wellness in cancer care. You’ll learn about different dietary approaches, exercise programs, and what current research says about their impact.
Whether you’re newly diagnosed, in treatment, or navigating survivorship, this webinar will provide tools and insights to help you feel stronger, more informed, and supported. A Q&A session will follow the presentations.
These webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes.
About Our Presenters:

Dr. Loren Yavelberg
University of Miami

Dr. Loren Yavelberg is an exercise physiologist with a PhD in Applied Cardiopulmonary Physiology whose research focuses on exercise oncology, lifestyle medicine, and supportive care interventions across the cancer continuum. His work integrates clinical trials, community-based programming, and behavioral strategies to improve treatment tolerance and patient outcomes.

Dr. Harleen Kaur
University of Miami

Dr. Harleen Kaur is a behavioral scientist with a PhD in Nutrition Sciences from the University of Alabama at Birmingham, where she was supported by the T32 Cancer Prevention and Control Training Program at O’Neal Comprehensive Cancer Center. She is currently supported by the T32 Training to Reduce Burden across the Cancer Control Continuum Multidisciplinary Program at Sylvester Comprehensive Cancer Center, where she is advancing her training in lifestyle medicine and oncology research. Her research focuses on the design, implementation, and evaluation of multibehavior diet and physical activity interventions during active cancer treatment and survivorship. Her work aims to advance precision lifestyle medicine through scalable, digitally supported behavioral strategies, leveraging digital technologies to expand reach and incorporating artificial intelligence to enhance personalization.
Thank You to Our Sponsors:

National Cancer Survivors Day
2026-06-07
June 7th is National Cancer Survivors Day.

GIST Updates from ASCO 2026
2026-06-17 13:00 (America/New_York)
REGISTERASCO (American Society of Clinical Oncology) is an important conference in the oncology community where new scientific research updates are shared. The Life Raft Group is excited to partner with Hirotaka Miyashita, MD PhD of UC San Diego Health, who will summarize abstracts and presentations that were presented during this conference that are relevant to the GIST patient community. Join us June 17th at 1pm for this virtual presentation. A Q&A session will follow the presentation.
These webinars are for informational purposes only and should not replace professional medical advice. Always consult your healthcare provider before making any treatment or lifestyle changes.
About Our Presenter:

Dr. Hirotaka Miyashita
UCSD Moores Cancer Center

Hirotaka Miyashita, MD, PhD, is a board-certified medical oncologist who specializes in treating patients with sarcomas, including rare and complex soft tissue and bone tumors. He is co-leader of the Sarcoma Disease Team at Moores Cancer Center, and also leads and participates in biomarker-driven early-phase clinical trials to bring innovative therapies to patients across cancer types.
Dr. Miyashita prioritizes shared decision-making, empowering his patients to make choices aligned with their goals and values. In caring for patients with sarcomas, rare and complex cancers that often require individualized care, he finds his work most rewarding when he can help patients live fulfilling lives with treatment plans that reflect their priorities and values.
With training in bioinformatics, he leverages his expertise to integrate and analyze complex biomedical data in support of precision oncology and translational cancer research. He has published multiple articles on clinical oncology and has experience designing and conducting early-phase clinical trials. He is a strong advocate for community-oriented, patient-centered clinical trials, aiming to improve access and equity in cancer research.
Dr. Miyashita completed a hematology/oncology fellowship at Dartmouth Cancer Center as well as a clinical pharmacology fellowship at Dartmouth Hitchcock Medical Center. He completed a residency in internal medicine at Icahn School of Medicine at Mount Sinai (Beth Israel) and a residency in general medicine at the University of Tokyo Hospital in Japan. He also has a PhD in bioinformatics from University of Tsukuba in Japan.
He is a member of multiple national and international professional societies, including the American Society of Clinical Oncology, the Connective Tissue Oncology Society, and the SWOG Sarcoma Working Group. Dr. Miyashita is board certified in internal medicine and medical oncology.
Thank You to Our Sponsors:

Water of Life 2026
2026-06-24 | Home Studios, Studio 1, 873 Broadway #301, NYC, NY, 10003, United States
June 24th & 25th
REGISTERWe’re honored to invite you to an unforgettable evening where exceptional whisky meets meaningful impact!
The Water of Life Charity Event returns this June, bringing together a curated whisky-tasting experience in support of The Life Raft Group and its mission to improve outcomes for people living with GIST, a rare gastrointestinal cancer.
At the heart of the event is our signature whisky speed-tasting, designed to give you access to a wide range of distinctive pours while deepening your appreciation for the craft and stories behind each one.
Guests may choose to attend both evenings or join us for the main event.
Please note: this year’s experience has been thoughtfully expanded to allow more time to enjoy each tasting.
Matthew J Lurin, MD, MBA, FACEP, CPE Founder, Water of Life Charity Event
EVENT DETAILS

June 24th: Ultra-VIP Event
6:00 PM – Begin at Home Studios with several rare and exclusive whisky pours. Move on next to our Cigar Event, where you'll continue enjoying special pours alongside our new event cigar.
June 25th: Main Event
5:00 PM – The event begins with two special masterclasses.
6:45 PM – The first whisky speed tasting starts.
There will be two 30-minute breaks:
Dinner break – Dessert and raffle announcement

TICKET INFORMATION

ULTRA VIP Ticket Includes:
Attendance at the Ultra VIP Event at Home Studios for food and drinks on Wednesday, June 24, followed by cigars at The Carnegie Club, PLUS attendance at the Water of Life Charity Event at Home Studios, which includes the two Whisky Masterclasses, speed tasting, food, and a custom WOL Glencairn on Thursday, June 25.
VIP Ticket Includes:
Attendance at the Water of Life Charity Event at Home Studios, which includes the two Whisky Masterclasses, speed tasting, food, and a custom WOL Glencairn on Thursday, June 25.
STANDARD Ticket Includes:
Attendance at the Water of Life Charity Event atHome Studios, which includes the whisky speed tasting, food, and a custom WOL Glencairn on Thursday, June 25.

You must purchase tickets before the event. Only 70 tickets will be sold for this exclusive event.
Act quickly before tickets sell out! Questions or Seating Requests? Please contact us at: wateroflifenyc@gmail.com
All attendees must be over the age of 21. The Life Raft Group is a non-profit, 501(c)(3) tax-exempt organization. Most gifts are 100 percent deductible as a charitable contribution under Federal and State income tax laws. Please consult your individual tax advisor to determine how much of your contribution is deductible.

Life Fest 2026 - Nashville
2026-07-10 15:00 - 2026-07-12 12:00 (America/New_York) | Loews Vanderbilt Hotel, 2100 West End Avenue, Nashville, TN, 37203, United States
Life Fest 2026 will be in Nashville, Tennessee – Friday, July 10th through, Sunday July 12th, 2026 at the Loews Vanderbilt Hotel, 2100 West End Avenue, Nashville, TN. Hotel, airline & parking information are on the registration page.
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.
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 for survival.
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 2026 will feature scientific presentations highlighting the newest research and the latest treatments.
Currently scholarship applications for Life Fest are closed. Please contact Brian Morello at bmorello@liferaftgroup.org for more information.

REGISTERDownload PDF of Agenda (subject to change.)

We have secured a block of hotel rooms for guests attending Life Fest 2026. This special group rate is only available until June 19th, 2026.
Loews Nashville Hotel at Vanderbilt Plaza
2100 West End Ave,
Nashville, TN 37203
1-877-879-7818
Reserve: www.loewshotels.com/vanderbilt-hotel/group-life-fest-event-2026
Parking for the conference location (Loews Nashville Hotel at Vanderbilt Plaza):
Self-parking for guests at Loews Nashville Hotel at Vanderbilt Plaza is $49 + tax per day, per vehicle.
Alternate parking:
Legacy Parking Company, LLC – Hayes Street Garage (4 minute walk to Loews Hotel)
2011 Hayes St, Nashville, TN 37203
1-209-489-7232
For parking details: bit.ly/LF-BookParking
Questions about Life Fest 2026?
Please reach out to Brian Morello, Director of Development at bmorello@liferaftgroup.org

Walk for Hope Nashville
2026-07-12 07:30 (America/New_York)
REGISTERIf you’re attending Life Fest 2026 Nashville or you live in the Nashville area, join us Sunday morning for a Walk of Hope with The Life Raft Group on Sunday, July 12 at 7:00 (registration). Walk starts at 7:30. Walk location will be the Vanderbilt Courtyard across from the Loews Vanderbilt Hotel where the conference is taking place. Join us as we raise awareness and funds for rare disease research & resources!
Please register before June 1st if you can so that we can order enough T-shirts. All shirts can be picked up on the day of the Walk. If you have any questions about the Walk or the t-shirts, please reach out to Brian: bmorello@liferaftgroup.org

GIST Awareness Day
2026-07-13
GIST Awareness Day is July 13th.
Click to download this year’s logo.

How can you raise awareness on GIST Awareness Day and throughout Sarcoma Awareness Month?
Like, share, and comment on our posts throughout the month and post your own story or the parts you feel comfortable sharing frequently. You can also host a July fundraiser on Facebook to honor your journey as a GISTer or a loved one who has faced GIST – see our resources here. If you are interested in organizing an another type of fundraising event, please contact Brian Morello at bmorello@liferaftgroup.org. If you want to share your story, to be distributed on LRG social media platforms and communities, please reach out to Carol Tordella at ctordella@liferaftgroup.org
This GIST Awareness Day, share the milestones, victories, and meaningful moments that make your GIST journey uniquely yours. Share your story on our GAD kudoboard today and share so others can share theirs! https://liferaftgroup.kudoboard.com/boards/OutDEFYR/GAD2026
