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February 2009

2nd NIH Pediatric GIST clinic proves successful

On January 22-23, 2009, the National Institutes of Health (NIH) held its second Pediatric and Wild-type GIST Clinic. Some comments were:

“I really enjoyed the clinic. I thought that everyone we encountered that works for the NIH was extremely kind, supportive and knowledgeable. I especially enjoyed being able to connect with other young adults with GIST. To be able to talk face to face with someone who knows firsthand about living with the uncertainty of a future, who understands about planning your life in three month increments in between scans and yet is still is hopeful. And I feel that all of us there were hopeful. The research being done gives us hope that there may be a cure in our lifetime. And that is just amazing! As a GIST patient, my biggest fear is leaving my little girls motherless at such young ages. This opportunity really impressed upon me that so much has been learned about GIST since my diagnosis (in 2002) that I can't wait to see what the next six years will bring!!”

“The NIH Clinic was a fantastic way to share information, help with the research and gather information. We are extremely grateful for the opportunity to meet the experts in the field of GIST research. However, we wish that we never had to have the experience. The easiest way to say it is, ‘It's an incredible place that you never want to be.’”

You can view a slide show at the new LRG Pediatric GIST site.

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