Rare Member Story

Home/Tag: Rare Member Story

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.

By |2019-11-08T10:26:51-05:00October 30th, 2019|Member Stories, News, Newsletter|

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.”

By |2019-11-08T10:01:40-05:00October 24th, 2018|Member Stories, News, Newsletter|

The Werners – Finding the New Normal Living with Wildtype GIST

Bryce Werner was a regular middle-schooler living an average 12-year-old life in Pennsylvania when suddenly everything was thrown wildly left of normal by a GIST diagnosis.

By |2019-11-08T11:05:18-05:00June 29th, 2018|Member Stories, News, Newsletter|

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.

By |2019-11-08T10:25:09-05:00June 23rd, 2016|News, Pediatric GIST|

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.

By |2019-11-08T10:09:10-05:00June 10th, 2016|Member Stories, Newsletter|
Go to Top