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, Ma...
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.
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