This is a collection of posts by LRG members who have faced the challenges of SDH-deficient GIST and other non KIT/PDGFRA subtypes. If you are interested in sharing your experience for the benefit of others, please email Mary Garland, Director of Communications at

Illustration of a icon for fact sheets
  • Delorenzo Family

Volunteer Spotlight

Raising awareness for the GIST community is important to the DeLorenzo family. Recently they held their 14th annual barbecue where friends and family gathered to fundraise for GIST research in support of The Life Raft Group.

  • Photo of Douglas and Bonita Morgan

A ‘Clinical Trial of One’

October's LRG newsletter features artist Douglas Morgan, who found himself with a rare GIST mutation and no treatment options until an innovative oncologist and a compassionate gesture by a pharmaceutical company gave him a chance to receive a unique treatment.

  • Portrait of Fatema Suterwala

Hope Prevails

At 39-years-old, Fatema Suterwala was preparing to say goodbye to her husband and young son. Confused by this cruel twist of fate and wracked with pain, she was saved by a collaboration of medical [...]

  • Mitch Swinbourn

Searching for Hope

In this article, Mom Glenda Swinbourn of Australia shares the story of her son Mitchell, a 13-year old with Carney-Stratakis Dyad. It is for patients like Mitch that the Pediatric & SDH-Deficient GIST Consortium was founded.

  • Liz Skree, GIST Survivor

The Healing Power of Adventure

A cancer diagnosis at any age is life-changing, daunting, and difficult. It can be especially challenging for young adults, people ages 18-39, who are dealing with cancer while also navigating college, first careers, new relationships, starting families, and other young adult milestones. Every year, 70,000 young adults are diagnosed with cancer, and that doesn’t include those diagnosed as children who are now young adult survivors and thrivers. As a young adult with cancer, I know it can be hard finding other people who “get it.”