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.
Heroes of Rare Disease: The 2021 Rare Impact Awards
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 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.
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.
Normal Life Interrupted
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.
Delivering Hope: A Modern Day Miracle of Birth
April Lopossa was faced with a daunting decision - to take Gleevec for her newly diagnosed GIST pre-surgery or wait until she delivered her unborn child.