The newest GISTer to join the ranks of LRG Global Representatives is Nandini Dabbir of Hyderabad, India. She is a the Friends of Max City Chapter Leader & GIST Advocate working with the LRG to support GIST patients on their journey.
GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.
June 28th Awards Ceremony registration: https://livingrare.org/rare-impact-awards/ Dr. Jason Sicklick, Blueprint Medicines Among Honorees Released 2/23/21 by NORD The National Organization for Rare Disorders (NORD®) announced this year’s Rare Impact Award honorees. These outstanding [...]
The Life Raft Group is pleased to welcome Mr. Young Jae Kim (YJ) as the new LRG representative (liaison) in our global network!
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.
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 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.
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.
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.
Angel Selena Rodriguez was living what she considered a very normal life. She was studying medicine, playing violin in an orchestra, and enjoying painting and drawing, and university in Venezuela.