Rare is our Reason

My battle started in 2001, when I was diagnosed with a gastrointestinal stromal tumor (GIST).  My intention following surgery was to put it behind me and just move on; however, my attention was jarred into focus 4 years later when I experienced my first recurrence. I was prescribed Gleevec, the newly discovered GIST magic treatment bullet.  Gleevec wasn’t originally developed for the treatment of GIST, but for chronic myelogenous leukemia (CML), as is sometimes the case when treatment advances for rare cancers dovetail on the discoveries for more rare cancers. Unfortunately, my tumors didn’t respond to Gleevec.  During my journey, I’ve taken 3 FDA-approved drugs, participated in 1 clinical trial, and undergone 6 surgeries.

Advances made by dedicated researchers has elucidated the role of SDH gene dysfunction in multiple cancer types, including GIST. 14 years after receiving my initial diagnosis, I learned, mostly through the process of exclusion and elimination, of the presence of an SDH germline as the source of my cancer.

 

My husband and I began the SDH Foundation to unite all the SDH-driven cancers, to bring strength in numbers to “even the playing field”.  Though rare, SDH-driven cancers share clinical characteristics. Grouping SDH-deficient cancers together can improve and accelerate research and treatment development.  

 

The SDH Foundation goals are simple but specific: make the needed tissue available for the researchers, and to the raise funds as quickly as possible to support the most innovative and promising research into our otherwise ignored rare cancers.