The Life Raft Group

LRG Open House
2025-06-27 12:00 - 14:00 (America/New_York) | The Life Raft Group, 155 US Highway 46, Ste. 202, Wayne Plaza II, Wayne, NJ, 07470, United States
Jerry Call stops at The Life Raft Group’s offices in Wayne, NJ on his way back home to Virgina. Come meet Jerry, the LRG Staff, Norman Scherzer as well as patients, caregivers and medical professionals. We are serving up lunch and beverages (all free) – indoors Building 2.
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Navigating Financial Support & Medicare Changes
2025-06-30 12:00 (America/New_York)
The Life Raft Group is partnering with Jennifer Noonan of Accessia Health to present “Navigating Financial Support & Medicare Changes: What Patients Need to Know in 2025” to our patient and caregiver community on June 30th at 12PM ET. During this virtual presentation, Ms. Noonan will cover key updates including the Medicare Prescription Payment Plan (M3P), cost-sharing “smoothing,” and how charitable financial assistance programs can support individuals navigating high out-of-pocket costs. Learn what these changes mean for patients and caregivers — and how to prepare for what’s ahead. A Q&A segment will follow Ms. Noonan’s 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. If you have questions or comments, please reach out to rpauley@liferaftgroup.org.
REGISTERAbout Our Presenter

Jennifer Noonan
Accessia Heath
Jennifer Noonan, Vice President of Clinical Strategy & Patient Engagement at Accessia Health, is a dedicated healthcare professional with 25+ years of clinical nursing experience. Her vast clinical management background spans diverse healthcare settings, showcasing her expertise in program design and service delivery under rigorous regulations. Her career began in emergency medicine in Louisville, KY, where she spent 17 years in leadership roles and contributing to EMR clinical development and implementation. Transitioning into hospice and palliative care in 2014, Jennifer excelled in leadership positions for both adult and pediatric patients. A resolute academic, Jennifer holds degrees from Kentucky State University and Western Governors University. She was appointed to the National Association of Specialty Pharmacy’s Board of Directors in September 2023. Beyond work, she is a family-oriented martial arts enthusiast, hiker, and avid traveler.
Thank You to Our Sponsors!

Virtual GIST Caregiver Support Group
2025-07-02 13:00 - 14:00, 2025-08-06 13:00 - 14:00, 2025-09-03 13:00 - 14:00, 2025-10-01 13:00 - 14:00, 2025-11-05 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.

GIST Awareness Day Fireside Chat
2025-07-11 14:00 (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 11th at 2PM ET. During this virtual event, esteemed GIST experts Dr. Sicklick of UCSD and Dr. Blakely and Dr. John Glod of the NIH will answer patient and caregiver questions in an informal chat.
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. If you have questions or comments, please reach out to srothschild@liferaftgroup.org.
REGISTERAbout Our Presenters

Dr. Jason Sicklick
UCSD, Moores Cancer Center
Jason Sicklick, MD, is an internationally recognized surgical oncologist who specializes in treating gastrointestinal stromal tumors (GIST), abdominal/retroperitoneal sarcomas, and liver tumors.He leader of the Sarcoma Disease Team and Co-leader of the Structural and Function Genomics Program at UC San Diego Health’s Moores Cancer Center. He is also a member of the National Comprehensive Cancer Network Soft-Tissue Sarcoma Committee and GIST Subcommittee, which develops best practices for treating these rare and often challenging-to-treat cancers.

Dr. Andrew Blakely
National Cancer Institute (NCI)
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. 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.

Dr. John Glod
National Cancer Institute (NCI)
Dr. Glod obtained his M.D. and Ph.D. from the University of Colorado in Denver and trained in pediatrics and pediatric oncology at Cincinnati Children’s Hospital, Johns Hopkins Hospital, and the Pediatric Oncology Branch of the NCI. Dr. Glod currently serves as the Clinical Director of the Pediatric Oncology Branch in the Center for Cancer Research at National Cancer Institute. Dr. Glod’s research interests are focused on early stage clinical trials for pediatric patients and rare pediatric solid tumors including multiple endocrine neoplasia-related medullary thyroid cancer, SDH-deficient gastrointestinal stromal tumor, and tumors of the central nervous system.
Thank You to Our Sponsors!

Día del aprendizaje sobre GIST en español
2025-07-14 12:00 (America/New_York)
RESERVE LA FECHA – 14 de Julio

Pronto compartiremos la agenda.
¡Reserve la fecha para el primer GIST Day of Learning en español!
El día del aprendizaje sobre Los Tumores del Estroma Gastrointestinal (GIST) es un evento gratuito diseñado para pacientes y cuidadores, donde pueden informarse sobre este cáncer poco común, encontrar apoyo y fortalecer su conocimiento para afrontar su camino contra el GIST.
REGISTRATELink Agenda PDF

¿Qué es un GDOL?
Un GDOL es un GIST Day of Learning (Día de Aprendizaje sobre GIST). Este es un evento gratuito de un día diseñado para ayudar a pacientes y cuidadores a aprender más sobre este cáncer raro, encontrar apoyo y ampliar sus conocimientos para navegar su camino en el tratamiento del cáncer.
The Life Raft Group está comprometido con mejorar la supervivencia y calidad de vida de las personas que viven con Tumor del Estroma Gastrointestinal (GIST) y otras enfermedades raras, a través de la investigación impulsada por los pacientes, la educación, el empoderamiento y esfuerzos de defensa a nivel global. Nuestra visión es impulsar un futuro basado en datos, guiando nuestro camino hacia la cura de enfermedades raras.
Si tiene alguna pregunta, comuníquese con Brian Morello en bmorello@liferaftgroup.org.
Gracias a Nuestros Patrocinadores!

Virtual Florida Support Group
2025-07-14 18:00, 2025-08-11 18:00, 2025-09-08 18:00, 2025-10-13 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
2025-07-15 15:00, 2025-08-19 15:00, 2025-09-16 15:00, 2025-10-21 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
2025-07-15 18:00 - 19:30, 2025-08-19 18:00 - 19:30, 2025-09-16 18:00 - 19:30, 2025-10-21 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

Virtual Texas Support Group
2025-07-28 18:00, 2025-08-25 18:00, 2025-09-22 18:00, 2025-10-27 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.

Making Cents of Caregiving
2025-08-12 12:00 (America/New_York)
The Life Raft Group is partnering with Al Berg of the AARP NJ Speakers Bureau to present “Making Cents of Caregiving” on August 12, at 12PM ET. In this informative and educational session, you will be introduced to essential information caregivers need to more easily manage the financial complexities of caregiving. Over the course of the presentation, you will learn how to incorporate financial tips and resources into your caregiving. By the end of the session, we hope you have the confidence to make your own financial plans for your loved one’s care and well-being. A question and answer 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. If you have questions or comments, please reach out to rpauley@liferaftgroup.org.
REGISTERAbout Our Presenters

Al Berg
AARP NJ Speakers Bureau
Al Berg is a volunteer with the AARP NJ Speakers Bureau, giving presentations on a variety of topics of interest to older Americans. During the day, Al heads up cybersecurity for a major entertainment company. When he is not fighting off hackers, he is an EMT with the Weehawken Volunteer First Aid Squad and lives in Weehawken with his wife and a very spoiled cat.
Thank You to Our Sponsors!

GDOL Los Angeles
2025-09-13 08:00 (America/New_York)
GDOL Los Angeles will take place in-person on September 13th at UCLA Health.
REGISTERClick for PDF Agenda

What 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

GDOL Boston
2025-09-27 08:00 (America/New_York)
GDOL Boston will take place in-person on September 27th at the Dana-Farber Cancer Institute.
REGISTERClick for PDF Agenda

What 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

Montreal GIST Day of Learning/Annual General Meeting
2025-10-04 10:00 - 16:00 (America/New_York)
GIST Sarcoma LRG Canada is hosting a GIST Day of Learning/GDOL/Annual Meeting on October 4 in Montreal for patients and caregivers. Refreshments and lunch provided.
MORE Info/register

ctDNA and the INSIGHT Study
2025-11-10 14:00 (America/New_York)
REGISTERThe Life Raft Group is partnering with Deciphera Pharmaceuticals and Dr. Jonathan Trent of the Sylvester Comprehensive Cancer Center to present “ctDNA and the INSIGHT Study” on November 10th at 2PM ET. During this virtual presentation, Dr. Trent will explain how ctDNA works as a non-invasive method to monitor mutations and disease progression, and how it may help personalize treatment strategies for GIST patients.
Denisse Evans, Sr. Director of Data Management & Research for the LRG, will present the results and analysis of the LRG’s recent patient survey: Understanding Mutational and ctDNA Testing for patients in the U.S. She will highlight how patients currently access and understand testing, key barriers to uptake, and what these findings reveal about the real-world experiences of the GIST community. Denisse will also discuss how these insights can help shape future education, advocacy, and research efforts to ensure patients have the tools they need to make informed decisions about their care.
A question-and-answer 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. If you have questions or comments, please reach out to rpauley@liferaftgroup.org.
About Our Presenters

Dr. Jonathan Trent
Sylvester Comprehensive Cancer Center
Jonathan Trent, M.D., Ph.D. is a board‑certified oncologist, professor of medicine, and Associate Director for Clinical Research at the Sylvester Comprehensive Cancer Center, University of Miami Health System. He serves as the Director of the Bone and Soft-Tissue Sarcoma Group and leads the Sarcoma Medical Oncology program, with a focus on gastrointestinal stromal tumor (GIST), chondrosarcoma, synovial sarcoma, and other rare sarcomas.
Denisse Evans, MS
Senior Director, Data Mgmt. & Research
Ms. Evans has a wealth of experience in clinical evaluation projects including development of protocols, case report forms, informed consent, surveys, tissue repositories, and study initiation She is proficient in data management, preparing research for publication, drug development, clinical trial protocols, onco-pathological/genetical dissemination, and formulating research premises. As the Senior Director of Data Management & Research, Denisse is the principal investigator for study protocol design and strategy of Patient Reported Outcomes (PRO). She has expertise in the analysis, reporting, and dissemination of PRO data and present scientific work.
She leads a dedicated staff in both patient support and in the identification of data trends that may lead to actionable information that will help patients coping with Gastrointestinal Stromal Tumor. In addition, she takes the lead in collaborative research initiatives, including maintaining relationships with potential partners, contributing ongoing data, and supporting hypothesis generation with the goal of increasing patient survival and advancing GIST research.
Denisse holds a Bachelor of Science degree in Biology from Rowan University, and a Master of Science Degree in Biomedical Science from Fairleigh Dickinson University.
Thank You to Our Sponsor!
