Dear Families,

Do you remember the moment your child was diagnosed with USP7? The overwhelming helplessness, confusion, and loneliness? Every rare disease parent will never forget that moment.

Let me share the inspiring story of Matt Might. Matt, a professor of computer science and pharmaceutical chemistry, experienced these same feelings when his son Bernard was diagnosed with the rare condition NGLY1. Determined to find answers, Matt wrote a viral blog titled Hunting down my son’s killer which led him to discover other patients and repurpose compounds that could help his son. His journey is chronicled in his powerful Ted Talk.

Matt Might now leads the Precision Medicine Institute at the University of Alabama Birmingham.   We are honored to have his Program Director, Aleksandra Foksinska, join us for a special webinar with the Hao Fountain Community. Ms. Foksinska will discuss the use of AI in drug screening and the exciting potential of repurposing existing drugs to help our children.

Imagine the possibility of an existing drug making a difference in our children’s lives! Don’t miss this opportunity to learn and be inspired.

Time:  June 17^th @ 1:00 pm (Eastern Time)

Sign up below to attend the amazing Zoom lunch and learn session! You'll receive the zoom info in a follow up email.