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.
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.
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 [...]
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.
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.”
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.
On December 7th, I will celebrate my 17th cancerversary. I was just 22 years old and newly married when I was diagnosed with GIST following surgery.
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.
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.
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.