The World Wasn't Set Up to Save Their Daughter, So Her Parents Tried Instead
Like many stories of hope, the Wilsey family’s begins with a challenge.
In 2013, Grace Wilsey was diagnosed with a rare genetic disorder called NGLY1 deficiency. At the time, Grace was one of only six known patients worldwide. For diseases this rare, funding for research is often nonexistent.
“The world wasn’t set up to save Grace,” according to her parents Matt and Kristen. So they started the Grace Science Foundation, with the hopes of changing the outlook for their daughter and those with this rare deficiency.
The foundation’s research isn’t just bringing families with NGLY1 deficiency closer to a cure — it is being used to discover and treat countless other diseases like Parkinson’s, Alzheimers, and cancers.
Matt Wilsey is passionate about their mission and advances so far. “Our only measure of success, is the positive impact we make in patients’ lives,” he says.
ADS is The Mighty's rare disease contributor. Her passion for advocacy and helping others make real, meaningful connections is what fuels her work.
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