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

14th NIH Pediatric and Wildtype GIST Clinic Convenes

If you have a mutation of any of the SDH subunits (a,b,c, or d), the next important question to ask is whether or not it is a germline mutation. (So far, data has indicated that 80% of SDH-deficient tumors are germline). The term "germline" means that the mutation is present in every cell of your body. Germline mutations are hereditary, and can be passed on to your children. For this reason, genetic testing and counseling could be informative for parents, siblings and other family members. If a family member tests positive for the mutation, this does not mean that they will get GIST.

  • Josalin Dunn

10 Things That Happen When You’re Diagnosed With Cancer

Cancer. We all know someone who has it or we know someone who knows someone who has it. Either way, it’s a subject that is kind of taboo. Firstly, the majority of the population think when they first hear the big C-word is that you’re going to be bald, you only get cancer when you’re old and you probably (hopefully not) will die.

  • Erin and her family settling into their new apartment.

GIST Keep Swimming: Words to Live By

Life with cancer is like tossing all your dreams, goals and achievements into a bag, shaking it up and dumping it onto the floor to be stomped upon. Some say I was lucky to get my diagnosis at age 16, before I had a career or a family to support.

  • Cathy and Brian March 15, 1982 at the opening of their shop.

Our “Silent Song”

My husband Brian, and I have been married 33 years and have worked together in an 8 x 10 room. Brian has literally been by my side since marriage. When I was diagnosed with Wildtype GIST, we knew this was a journey we’d be taking on together.

  • Josalin Dunn

Cancerversary 10 Years – Josalin Dunn

Josalin Dunn is celebrating her ten year cancerversary. “Staying positive about my cancer isn’t always easy,... but I keep reminding myself that there are others who have it worse. I am blessed!”