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!
Patient Advocacy in Brazil – Instituto Oncoguia
Luciana Holtz de Camargo Barros, founder and president of Instituto Oncoguia, authored this article about the creation and advocacy issues of this cancer patient advocacy organization based in São Paulo, Brazil.
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.
GIST & Creativity – Gewelry for GIST with Christine Gonzales
Christine, a former elementary school teacher, is raising three sons with husband Adam, in New Mexico. She doesn’t feel that creativity has always had a place in her life, but teaching elementary school always provides opportunities for innovation and creative thinking so perhaps it’s a matter of perspective.
GIST & Creativity – Art Quilter, Crafter, Teacher Claire Monaghan
GIST happened soon after her first quilt was accepted into a quilt exhibit and after participating in her first holiday craft show last December. Every GIST patient has a unique story about how they were diagnosed and where their journey takes them but Claire can literally credit a recurrence of her sister's ovarian cancer in January as the reason she found her GIST tumor.
GIST & Creativity – Sculptor & Public Artist, Tim Watkins
You may have spotted a creation by May & Watkins Design and not even realized it. They create public art, or industrial sculptures – art that is commissioned for public spaces. The partnership of artists, Carol May and Tim Watkins, began after meeting as 20-somethings on scholarship at the Skowhegan School of Painting & Sculpture in Maine.
GIST & Creativity – Industrial Designer, John Paul Zagami
Pratt institute graduate, John Paul Zagami studied industrial design. John’s journey with GIST began with unexplainable digestive issues. After suffering a kidney stone attack which led to an ER visit, a mass was found.
Points of Light for 2020
Despite the challenges of Covid, the LRG has quickly developed new ways of working together virtually. We have kept afloat and served our community well during this dark year. These points of light show just how far we've come this year.