Our theme for 2020 was Hope. 2020 presented a challenge to us all, but most especially to our patients and caregivers who are seeking to survive this rare cancer. In 2020, The Life Raft Group needed to provide a lifeline to our community, and to offer them hope in the form of increased support as we navigate the challenges of living in a COVID-19 world. #GISTHope
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Kamel Ahmed shares his story.
The National Organization for Rare Disorders (NORD) held a webinar on February 19th, 2021 for NORD member organizations as well as leaders and staff of nonprofits organizations involved in rare diseases including pharma, patients, caregivers, and advocates.
Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020. She was known to her family for many things. Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.
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 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.
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. John Abrams shares his story.
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.
