Never Give Up

The recent Angels for Angels Charity Gala raised more than $100,000 for the Foundation for Angelman Syndrome Therapeutics (FAST), the largest non- governmental funder of Angelman syndrome-specific research in the world.

The nonprofit helps fund cutting-edge research and takes an active role in drug development to treat and cure Angelman syndrome (AS), a rare, severe neurological disorder that primarily affects the nervous system, delaying development and causing intellectual disabilities and problems with motor coordination and balance.

Guests at the sold-out gala enjoyed musical entertainment by Rock With U, dinner, dancing and a silent auction. Dr. Ed Weeber, a pioneer in AS research and the first scientist to cure AS in his lab, shared updates on his inspiring work.

Eslin Guice, whose daughter was diagnosed with AS, and her sister Erin Cain were co-chairs.

"We were stunned when our daughter Gianna was diagnosed because we had never heard of Angelman syndrome," Guice says. "We found that over 50 percent of kids are initially misdiagnosed as having autism or cerebral palsy. That's when we decided we had to raise awareness."

AS, which affects nearly 500,000 people in the world, has been cured in the laboratory using multiple strategies, including drug activation of the paternal gene, protein replacement therapy and biologics. Advances in AS research could impact patients with Alzheimer's, ALS, Rett syndrome and Fragile X syndrome, among others.

"With research funding, it's not a question of if," Guice adds. "It's a matter of when, and the impact could go beyond Angelman Syndrome. That will be life-changing for so many individuals and families." O

For more information, visit cureangelman.com.