2000 was a dark period for a group of patients who had no viable treatment for their rare cancer. Most had been misdiagnosed and for many, it felt as if there was no hope. And then came a ray of light in the darkness. A scientific breakthrough gave a name to their cancer – gastrointestinal stromal tumor, which led to new options. Through the efforts of dedicated researchers and the tenacity of a pharmaceutical executive who dared to bring an obscure treatment to market, hundreds of lives were saved, including that of my beloved wife, Anita.
2020 has also been a period of great darkness. Since our beginning, the Life Raft Group and our members worldwide have been furiously paddling to keep GISTers alive. Suddenly, this year, we found ourselves in rougher seas, with the light dimming as our patients faced the challenge of getting essential treatments during a global pandemic. We were in uncharted waters.
But the Life Raft Group is built on a foundation of love and persistence that enables us to do great things together. In this dark year, we were not only the life raft for patients, but also the lighthouse, shining light where there was little.
Of all that we have strived for this year, there are two examples of those points of light that touched me deeply. This past April we were contacted by a young mother in Ireland whose seven-year-old daughter was diagnosed with GIST. Her primary treatment team suggested an operation that would be severely life-altering for this young girl. It was critical for her future to have more viable solutions from the best experts available. Within days, we assembled a team of 12 renowned GIST specialists from around the globe who sacrificed time out of their busy schedules in the middle of a pandemic to collaborate on options for the child’s treatment. This LRG Virtual Tumor Board provided a lifeline for this young patient and changed her outcome considerably.
Her treatment team in Ireland worked closely with these GIST specialists, and a new plan was developed that would spare this beautiful young girl from undergoing what would have been a daunting challenge to her quality of life.
June brought another significant point of light into our lives when the National Institutes of Health (NIH) asked us to facilitate a virtual version of their Pediatric & Wildtype GIST Clinic. Since 2009, we have been instrumental in establishing and supporting this clinic, which provides both expert consultations and a chance for these young GIST patients and their families to bond.
Faced with the Covid-19 pandemic, the clinic was not able to meet in-person. The NIH called on the Life Raft Group to help arrange a virtual event, which resulted in a review of challenging cases by a group of renowned GIST specialists from around the globe – an amazing collaboration across borders of country, organization, and cultures.
These points of light are just two that stand out to me. I am in awe of the selflessness of our medical professionals, the hard work being done by our staff, and most importantly, the way our GIST community of patients and caregivers have been there for each other.
It is my hope that you will help us through this dark time by continuing to support our efforts with your donations. Needless to say, the pandemic has put a dent in our funding while the need for our interventions has grown.
Let’s continue to be points of light for each other.
– Norman J. Scherzer, Executive Director of the Life Raft Group
As 2020 comes to an end, we acknowledge that it has been a dark time. But as we look back on what the Life Raft Group has accomplished despite the challenges we faced, we began to see there were points of light along the way giving us hope.
COVID Resources
– Established section of our website to provide information on COVID-19
– Provided numerous articles and resources for patients
– Supported patients in finding telehealth consultations
– Presented information in webinars
– Received Rapid Response Seed Grant from NORD for our efforts
Expanded our Board with new Members
Steve Pontell
Eric Biegansky
Virtual Tumor Boards (3 held this year)
– NIH asked us to take on the responsibility for the VTBs to replace the annual in-person NIH Pediatric & Wildtype GIST Clinic
– Young pregnant patient who went on to give birth to a healthy child
– Young girl in Ireland who was prevented from a life altering surgery
Engaging international specialists in finding solutions for challenging cases
GIST Entertainment
– Mindfulness Series
– Trivia
– Book Club
– Yoga
– Meditation
GIST Days
– Seattle -66 registrants
– Tampa -70 registrants
– Denver -45 registrants
GIST Do It Walks
– Seattle, WA
– Verona, NJ
Webinars
– New Treatment Options for GIST and Concerns about Coronavirus
– GIST, TKI Treatments and Effects on Memory
– How to Read a Pathology Report
– GIST 101 presented to Henzo Kenya
– Genetics
– Conversations with the LRG: COVID, GIST Mentors (2)
Support
– First Virtual Support Groups for Patients and Caregivers
– Serving 115 Mentees through our GIST Mentors program
Global Surveillance Team
Presented interesting cases and thought-provoking questions on a regular basis
Publications
– Four Newsletters published
– Profiled heroes and long- term survivors in our June Hope Issue
– Three issues of LRG Science published
– Annual Report published
Virtual Life Fest
– 196 attendees
– Virtual cooking demonstration
Patient Registry Support
– Telehealth coordination during pandemic
– Expanded registry membership
– Profiled Patient and Caregiver of the Month
– Expanded registry fields to collect side effects data & quality of life data
– Salud con Datos-Latin American registries established
Revitalization of our Medical Advisory Board
Lifeline for other non-profits
– Providing help for Giant Cell community
New Horizons Virtual Conference
Collaborations
– Foundation Medicine
– New Tissue Bank at OHSU
– Columbia Presbyterian
– Pediatric & SDH-Deficient GIST Consortium algorithm for standardization of diagnostic testing, accepted by CAP and NCCN
– Co-authored white paper with other organizations on consistent terminology for testing
Organizations/Virtual Conferences
– SPAEN
– SELNET
– ASCO – presented poster on algorithm
– CTOS – Sara Rothschild was an member of GIST expert panel, Jerry Call presents poster
– ISPOR – Pete Knox actively involved
– Faster Cures – David Josephy participated in conference
– CTTI – Jerry Call is part of this initiative
– MyPART (Pediatric & Adult Rare Tumor Network)
– OVAC – Virtual Lobby Day
– NORD – LRG staffers attended conference
– Norman Scherzer on the Herbert Irving Center Advisory Board at Columbia Presbyterian
New Initiatives
Women in Sarcoma Program & Gala
International
– Welcomed multiple, new country liaisons
– Piga Fernández’s advocacy efforts resulting in cancer law enacted in Chile
– Webinar for international advocacy groups on COVID
– Record participation worldwide for GIST Awareness Day despite the pandemic
Membership
Increased membership
Additional Events
– GIST Awareness Day
– Real World Evidence
– Creation of Science Forum
– Algorithm published
– Launched survey of long term survivors
LRG Staffers – We have quickly developed new ways of working together virtually
Most importantly, kept the Life Raft Group afloat in spite of the turbulent waters this pandemic has created.
We thank all of you, patients, caregivers, medical professionals, researchers, donors, board members and friends for being our points of light this year, and always. Love from The Life Raft Group!
