The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
I had the pleasure of attending the 15th Pediatric and Wildtype Clinic along with Becky Owens from GIST Support International as patient advocates. The Clinic was held at the National Institute of Health in [...]
The 15th Pediatric and Wildtype GIST Clinic was recently held at the National Institute of Health in Bethesda, Maryland on July 5 - 7, 2017. The Clinic is a collaborative effort between clinicians and [...]
Participants at the 15th Pediatric and Wildtype GIST Clinic at the National Institute of Health (NIH) on July 5-7 participated in GAD activities based on our H.E.R.O. campaign. Our NIH Clinic participants [...]
A recent report from the National Institutes of Health Pediatric and Wildtype GIST Clinic, published in the Journal of Clinical Oncology suggests that surgical resection for wildtype GIST should be restricted to the initial [...]
In 2015, we continued to commit funding for our research team in spite of a challenging fundraising landscape. Our research team held a two-day meeting at the Cleveland Clinic, outlining two key projects: A [...]
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.
The 14th Pediatric and Wildtype GIST Clinic was held at the National Institute of Health (NIH) in Bethesda, Maryland on June 15-17, 2016. What follows is a summary of the discussion held during the [...]
Members of Team-J's Charity Bicycling Team are planning to bicycle in Ride Across America in support of two causes; Hydrocephalus Awareness - www.hydroassoc.org GIST Pediatric Cancer Awareness - www.liferaftgroup.org Donate Now TEAM-J's local [...]
Live from Washington By Mildred Menos Hi Guys, Some of you may know me from hosting GDOLs (GIST Days of Learning in your city, that welcome phone call you received when you became a [...]