Virtual Caregiver Support Group
2021-09-15 13:00 - 14:00, 2021-10-06 13:00 - 14:00, 2021-10-20 13:00 - 14:00, 2021-11-03 13:00 - 14:00, 2021-11-17 13:00 - 14:00, 2021-12-01 13:00 - 14:00, 2021-12-15 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.

Virtual GISTer Support Group
2021-10-05 18:00 - 19:30, 2021-11-02 18:00 - 19:30, 2021-12-07 18:00 - 19:30, 2022-01-04 18:00 - 19:30, 2022-02-01 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

New Member Orientation - Virtual
2021-10-07 08:00, 2021-10-07 12:00, 2021-11-04 08:00, 2021-11-04 12:00, 2021-12-02 08:00, 2021-12-02 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

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.

GDOL New York City/New Jersey - Virtual
2021-11-06 10:00 - 12:00 (America/New_York)
This virtual meeting is for GISTers in the NY-NJ area.

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.
REGISTERThank you to our sponsors for this event:

Immunotherapy and GIST
2021-11-18 13:00 - 14:15 (America/New_York)
As the landscape of GIST treatment continues to evolve, the area of immunotherapy has grown interest. GIST contains tumor-infiltrating immune cells which opens the possibility to the rationale for immunotherapy treatments. This webinar will provide an overview of immunotherapy with some examples of studies exploring single agent versus combination of therapy in GIST.

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
Director, Sarcoma Oncology
Sylvester Comprehensive Cancer Center
Miami, Florida
Dr. 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.
Junaid Arshad, MD
Assistant Professor & Clinical Scholar
University of Arizona Cancer Center
Tucson, Arizona

Dr. Arshad finished his medical degree from King Edward Medical University, Lahore Pakistan. He relocated to the United States in 2013 and worked as a research volunteer at Wayne State University, Detroit. After completing his internal medicine residency training from St. Mary’s Hospital Waterbury, CT, he moved to University of Miami for his hematology and medical oncology fellowship.
Dr. Arshad developed interest in Gastrointestinal Stromal Tumors (GIST) after working with Dr. Jonathan Trent who was also his mentor at the University of Miami. Dr. Arshad has published several peer reviewed publications focusing on the use of ctDNA in GIST. Currently Dr. Arshad is working as an Assistant Professor at University of Arizona Cancer Center in the field of GI Medical Oncology focusing on the GIST and Upper GI cancers.
Arun Singh, MD
Oncologist, Sarcoma and Connective Tissue Medical Oncology
University of California Los Angeles Medical Center
San Monica, California

Dr. Singh is an associate professor in the Department of Medicine, Division of Hematology/Oncology at the David Geffen School of Medicine UCLA. Dr Singh is a hematologist and medical oncologist whose practice focuses on the treatment of bone and soft tissue sarcomas. Dr Singh’s research focus is on developing novel therapies for patients with sarcomas. In the preclinical setting, he works on elucidating the mechanisms contributing to the promotion of growth in cancer cells and optimizing the use of targeted therapy in specific sarcoma subtypes. The insights gained from these efforts are then translated into the clinic in the form of new drugs in early stage phase 1 and 2 clinical trials for sarcomas where there is an unmet clinical need.
Ronald DeMatteo, MD, FACS
Surgeon, Endocrinology and Oncology
Penn Medicine
Philadelphia, Pennsylvania
Dr. DeMatteo is the Chairman of the Department of Surgery and a Surgical Oncologist who specializes in treating diseases of the liver, bile duct, gallbladder, pancreas and abdominal sarcomas (GIST). His clinical research has focused on liver, bile duct, gallbladder, and pancreas cancers. In addition, he has led several national trials testing the benefit of imatinib mesylate (Gleevec) following surgery for gastrointestinal stromal tumor (GIST), a tumor that usually begins in the stomach or intestine. In the laboratory he and his colleagues study the immune environment of the liver and tumor immunology, working to develop immune therapies to help prevent tumors from returning after surgery.
Thank you to our sponsors!

GISTLearn Online - GIST Sarcoma Life Raft Group Canada
2021-11-20 14:00 - 16:30 (America/New_York)
GIST Sarcoma Life Raft Group Canada (LRGC) is pleased to invite you to register for our “GIST LEARN Online” virtual meeting on Saturday, November 20, 2021. The Annual General Meeting meeting will be held at the beginning of the videoconference.
For the past thirteen years, Life Raft Group Canada has been hosting GIST patient and caregiver meetings to provide support and education for those living with GIST. These events are open to GIST patients, caregivers, family members, friends, healthcare providers, and anyone who wishes to learn more about GIST.
LRGC Annual General Meeting
LRGC members have already been notified about our AGM. Everyone attending the November 20th GIST LEARN Online, is also welcome to attend the AGM portion of the meeting, although only LRGC members can participate in the voting procedures. Again this year, voting at the AGM will be conducted using Zoom polling.
New Horizons GIST 2021 Conference
The New Horizons GIST conferences traditionally focus on large annual meetings gathering over 50 representatives from 30 countries to discuss critical information that impacts the global GIST patient and medical communities.
If you have any questions or would like more information, please don’t hesitate to contact LRGC at malcolm.sutherland@liferaftgroup.ca
REGISTERSpeakers
Joanna Przybyl, PhD
Assistant Professor, Department of Surgery, McGill University
Principal Investigator, Cancer Research Program, Research Institute – McGill University Health Centre
David Josephy, PhD
President, GIST Sarcoma Life Raft Group Canada
Professor of Molecular and Cellular Biology, retired.
David has been involved with GIST for the past 20+ years
Hazel McLeod
Director, GIST Sarcoma Life Raft Group Canada.
Since 2018, Hazel has been leading roundtable discussions
with GIST patients and caregivers across Canada

GDOL Pittsburgh - Virtual
2021-12-11 10:00 (America/New_York)
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
REGISTERThank you to our sponsors for this event:

Virtual Caregiver Support Group
2022-01-05 13:00 - 14:00, 2022-01-19 13:00 - 14:00 (America/New_York)
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 Value of Biomarker Testing: Case Studies
2022-01-06 12:00 - 13:00 (America/New_York)
Case Studies Across Multiple Institutions
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 this webinar, you will hear case study presentations from three top sarcoma institutions that demonstrate the value of biomarker testing. A Question & Answer session will follow the presentations.
REGISTERPresenters:
Prapassorn Thirasastr, MD, MSc
Post doctorate Fellow
Sarcoma Medical Oncology Department
The University of Texas MD Anderson Cancer Center, Texas
Dr. Thirasastr graduated from faculty of medicine, Chulalongkorn University in Bangkok, Thailand. She had trained at King Chulalongkorn Memorial Hospital, Bangkok, Thailand for 6 years and received board certification in both Internal Medicine and Medical Oncology. Also, she had awarded a Higher Graduate Diploma of Clinical Sciences and Master of Sciences degree from Chulalongkorn University in 2016 and 2018, respectively. Dr. Thirasastr had practiced as a medical oncologist in Thailand for 2 years before joining post-doctoral research program in MD Anderson Cancer Center under Dr. Neeta Somaiah, an Associate Professor of Sarcoma Medical Oncology and Deputy Chair in Division of Cancer Medicine at University of Texas MD Anderson Cancer Center, as her Mentor.Currently her researches focus on sarcoma, especially liposarcoma, and GISTs and she has engaged in both clinical and basic science research projects.

Steven Bialick, DO
Sylvester Comprehensive Cancer Center, Miami
Steve Bialick, DO is a second-year 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.

Dr. Dixon Dorand, MD, PhD
Clinical Fellow
Vanderbilt University Medical Center
Dr. R. Dixon Dorand, Jr., MD, PhD completed his graduate studies at Case Western Reserve University in Cleveland, OH. His research with Dr. Alex Huang, MD, PhD at Rainbow Babies and Children’s Hospital focused on understanding the mechanisms regulating immune therapy in adolescent and young adult cancers. Specifically, he investigated the signaling pathways that alter gene expression involved in regulating responses to immune checkpoint therapy as well as the role of nanoparticles for drug delivery. After graduation, he enrolled in the Physician Scientist Training Program at Vanderbilt University Medical Center where he completed his internal medicine residency training.
Dr. Dorand is currently completing his medical oncology fellowship in the Molecular and Genetic Epidemiology of Cancer program at Vanderbilt Ingram Cancer Center (VICC). He works in the laboratory of Dr. Ben H. Park, MD, PhD where he uses a basic science approach to interrogate how mutations that regulate genetic machinery can be manipulated for therapeutic benefit. He also uses genetic profiling to determine which tumor mutations contribute to chemotherapy resistance in sarcomas. Clinically, he collaborates with Dr. Elizabeth Davis, MD & Dr. Vicki Keedy, MD at VICC to characterize mutations in patient tumor samples in GIST and other sarcoma types that may provide new therapeutic targets. He hopes to pursue a career focused on GIST and other soft tissue & bone sarcomas once he completes his formal training.

GDOL Arizona - Virtual
2022-01-27 14:00 - 16:00 (America/Phoenix)
GDOL Arizona Virtual is January 27th, 2pm – 4pm MT/4pm – 6pm ET
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
REGISTERThank you to our sponsors for this event:
