Patient of the Month for July: Robert Cabion
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Robert Cabion shares his story.
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.
Dae Shik Kang Walks to Spread Hope
South Korean GISTer Dae Shik Kang, 62 years old, walked 430km (267 miles) to share hope and courage. Today Dae is still spreading hope & staying healthy.
Patient of the Month for May: Pamela Trovato Nau
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Pamela Trovato Nau shares her story.
Annual Report 2020
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
Patient of the Month for March: Kamel Ahmed
Each member has a unique story, but all reflect the intrinsic courage of one facing the challenge of GIST. Kamel Ahmed shares his story.
LRG Represented on Panel About Diversity
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.
Cupcake Records Honors Lorie (Skelton) Perry
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.
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