We are a group of SDH-deficient GIST patients, family members, or caregivers. Our Mission is to promote SDH-deficient GIST research, recognizing it as a unique tumor with different biology than c-KIT/PDGFRa mutated GIST. We seek to help active SDH-deficient GIST researchers in obtaining fresh or viably frozen tumor tissue, to educate patients on the importance of donating their tumors and to be a portal to labs in need of funding.
We are an all-volunteer, patient-centered, grassroots group. Many of us have an inherited DNA mutation that may also affect other family members. We are dedicated to doing what we can to find a cure, which currently does not exist.
We’re taking inspiration from our "Stage IV incurable" diagnoses as stepping stones rather than tombstones.
"Patients not Politics"
SDH-Deficient Gist Cancer Research - Seeking Solutions for an Incurable Cancer