Grace was born in 2009 with a rare, debilitating disease. Deep in confusion and grief, Kristen and Matt Wilsey were faced with three options:
- Go home and simply enjoy their daughter. To them, this was akin to “giving up”.
- Focus 100% on improving the quality of Grace’s daily life through therapy.
- Find a cure themselves.
They went with option 3 and set out to find a cure.
After receiving Grace’s diagnosis in 2013, Matt and Kristen established the Grace Science Foundation to fund research by premier labs around the world to better understand NGLY1 Deficiency. This research rapidly produced numerous insights into the disease. Grace Science, LLC was founded in 2017 to translate these findings into therapies.
Due to the relatively small populations of patients with rare diseases, most conditions don’t garner the attention of large pharmaceutical companies. We see rare diseases differently and are altering the basic model for approaching them. This is driven by our understanding that studying rare diseases is a valuable opportunity to gain otherwise unpredictable new insights into biological pathways. We can apply this knowledge to more common diseases.
Our model is simple:
- Identify a rare disease that results from a single gene mutation
- Perform basic research to determine which pathways are affected by mutation
- Identify other diseases that share these pathways
- Rapidly develop drugs that target the pathway
- Treat both the rare and more common diseases
NGLY1 Deficiency is just the beginning. We have no intention of stopping there!
Meet Our Team
A unique ecosystem of brilliant minds: Individuals who see the bigger picture and are willing to try a new model that allows for significant breakthroughs. Individuals who are collaborative & driven to learn and advance science.
“Because of Grace and her rare genetics, we’re looking where others aren’t. And that’s opening up possibilities for new discoveries that could have huge benefits.”
Rare Unlocks Common
Grace Science is leveraging NGLY1 biology to treat human disease.