By: Sharon Aron Baron
A local organization raised over $100,000 for Angelman Syndrome – a disease affecting a half million people in the world.
The Angels for Angels Charity Gala raised money for the Foundation for Angelman Syndrome Therapeutics, the largest, non-governmental funder of Angelman Syndrome-specific research in the world.
Co-chaired by Coral Springs residents and sisters Erin Cain and Eslin Guice – Guice’s had never heard of the disease before her daughter was diagnosed with it.
“We were stunned when our daughter Gianna was diagnosed because we had never heard of Angelman Syndrome,” said Guice. “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.”
Foundation for Angelman Syndrome Therapeutics, or FAST, raises money to fuel cutting-edge research and takes an active role in drug development to treat and ultimately cure Angelman Syndrome, a rare, severe neurological disorder that primarily affects the nervous system, delaying development and causing intellectual disability 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 with gift baskets, vacation getaways, jewelry and more. Dr. Ed Weeber, a pioneer in Angelman Syndrome research and the first scientist to cure AS in his lab, shared updates on his inspiring work.
Angelman Syndrome, has been cured in the laboratory using multiple strategies – drug activation of the paternal gene, protein replacement therapy and biologics. Advances in Angelman’s research could have effects on patients with Alzheimer’s, ALS, Rett syndrome and Fragile X syndrome, among others.
“The funds we raised will accelerate the speed that a cure will be available,” said Guice. “With research funding, it’s not a question of if, 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.”
- Sharon Aron Baron is the Editor of Talk Media and writer for Coral Springs Talk. CST was created in 2012 to provide News, Views, and Entertainment for the residents of Coral Springs and the rest of South Florida.