Member Stories

Rare Diagnosis Fosters a Passion for Biomarker Testing & Self-Advocacy

GISTer Bill Borwegan shares his inspiring GIST journey illustrating the importance of biomarker/ mutational testing and self-advocacy as a rare disease patient.

By |2021-06-29T11:57:41-04:00June 29th, 2021|Member Stories, News, Newsletter|

Cupcake Records Honors Lorie (Skelton) Perry

Lorie (Skelton) Perry was a GIST patient who passed away on November 11th, 2020.  She was known to her family for many things.  Among them were her warmth, her willingness to help others, and her talents as a baker. Her family wanted to find a way to honor her memory with a fundraiser.

By |2023-03-06T15:33:19-05:00February 24th, 2021|Fundraising, Member Stories, News|

April Stephens, Long-Term Survivor

The average GIST patient is in their 50s or older when diagnosed with GIST. The rare exception is usually a pediatric SDH- deficient GIST, but April’s case is a case of ‘the rarest of the rare’ in that she was only 20 years old when she first encountered GIST and was not SDH-deficient.

By |2021-02-24T08:34:24-05:00February 24th, 2021|Member Stories, News, Newsletter|
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