Dear SDH-deficient GIST Community,
We have scaled the mountain (as we channel Dr. Seuss!) and have had a great year so far since we launched the Pediatric & SDH-Deficient GIST Consortium at the Biden Cancer Summit last September 2018.
We wanted the opportunity to share with you a summary of highlights:
1. A number of SDH-focused presentations were given by experts in the field.
2. We created a SDH-DEFICIENT GIST FACT SHEET!!!
The purpose is to share this with family and friends as well as families who may ask these questions at the beginning of their cancer journey. We worked really hard on this, but your feedback is important to us! If there is something in the document that is unclear or if you think we are missing a question that is important to include, please let us know.
Also, in that spirit, we are also working on updating the content of our website specifically regarding SDH. Please stay tuned to an announcement when the webpages are live. Once again, your feedback is welcome.
3. Next Friday May 31st, our Consortium plans to meet in Chicago before the Annual Society for Clinical Oncology (ASCO) conference where they will share updates on their research and clinical observations about the disease, collaborate on sharing data and working towards establishing more consensus about SDH-deficient GIST.
4. Last but not least, we are really excited that the Consortium has impacted pathology guidelines and plans to see updates in the new release of College of American Pathologists (CAP) guidelines in August 2019. Additionally, this past week we submitted suggestions to the National Comprehensive Cancer Network (NCCN) guidelines, of which clinicians will meet in June 2019 to decide if they will accept our suggestions. More to follow when we hear back from NCCN!
At our heart is our patients, and we will continue to fight hard to build the expertise among the physicians about this rare disease and foster collaboration to get us closer to a cure.
Sara Rothschild, Senior Vice President of Program Services
The Life Raft Group