Clinical Trials Update – December 2021
December 2021 - In this summary, we have highlighted recent clinical trials that are still recruiting in the U.S. which investigate potential treatments for GIST patients.
Thriving & Challenging Yourself While Living with GIST, Elyse, Part 1
GIST patients face many obstacles and challenges to get to a place where they’d say they were thriving. Physical challenges from surgeries, pain and side effects can severely change the lifestyle and activities they enjoyed before GIST. Elsye Walker and Stijn Belmans, faced those changes and decided they wouldn’t accept an altered version of life.
Thriving & Challenging Yourself While Living with GIST, Stijn, Part 2
GIST patients face many obstacles and challenges to get to a place where they’d say they were thriving. Physical challenges from surgeries, pain and side effects can severely change the lifestyle and activities they enjoyed before GIST. Elsye Walker and Stijn Belmans, faced those changes and decided they wouldn’t accept an altered version of life.
A Conversation with a Few of Our Global GIST Mentors
n June 2021, we trained seven LRG members from Austria, Canada, Chile, India, and Singapore. LRG’s Global GIST Mentors are survivors or caregivers who volunteer their time, energy, and talent to support others.
Common Side Effects & How to Manage Them
Every GIST patient (and person in general) is unique, however, there are some common issues that patients may face during their GIST journey.
The Eyes Don’t See What the Mind Doesn’t Know – GIST Education in México
Rodrigo Salas & Berenice Carbajal-López of Fundación GIST México illustrate how this organization is working to spread GIST awareness and education.
Rare Diagnosis Fosters a Passion for Biomarker Testing & Self-Advocacy
GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.
Resources on Pregnancy & GIST
In our LRG community, we’ve seen many examples of GISTer family planning but also women who have found out they had GIST while they were pregnant. Here are some helpful resources
The LRG Welcomes Young Jae Kim as Our Newest Liaison
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
April Stephens, Long-Term Survivor
The average GIST patient is in their 50s or older when diagnosed with GIST. The rare exception is usually a pediatric SDH- deficient GIST, but April’s case is a case of ‘the rarest of the rare’ in that she was only 20 years old when she first encountered GIST and was not SDH-deficient.