Angelman Syndrome is a little known genetic disorder
Coral Springs residents, Eslin and Mathew Guice, noticed that their daughter, Gianna, was not reaching certain developmental milestones. After taking Gianna to several doctors and specialists, she was diagnosed with Angelman Syndrome, a rare, severe neurological disorder that primarily affects the nervous system. Angelman Syndrome causes development delays, severe speech impairment, intellectual disability, problems with movement and balance, and seizures.
“We were completely shocked and heartbroken. We thought something was wrong but never imagined it would be this severe” Eslin says. “We found that over 50 percent of kids with Angelman Syndrome are misdiagnosed as having autism or Cerebral Palsy.”
To create awareness and raise funds for research, Eslin and her sister, Erin Cain, are co-chairing the Angels for Angels Charity Ball from 7 to 11 p.m. on Saturday, June 2 at The W Fort Lauderdale, 401 N. Fort Lauderdale Beach Blvd.
Guests will enjoy musical entertainment by Rock With U, dinner, dancing and a silent auction with gift baskets, vacation getaways, jewelry and more. WPLG-TV’s Kristi Krueger is the emcee for the evening. Tickets are $125 per person.
Funds raised will directly benefit the Foundation for Angelman Syndrome Therapeutics (FAST), the largest, non-governmental funder of Angelman-specific research in the world. FAST, a registered 501(c)(3), raises money to fuel cutting-edge research and takes an active role in drug development to treat, and ultimately cure, Angelman Syndrome.
Angelman Syndrome, which affects nearly one half million people in the world, including actor Colin Farrell’s son, has been cured in the laboratory using multiple strategies -- drug activation of the paternal gene, protein replacement therapy and biologics. Advances in Angelman research could have effects on patients with Alzheimer’s, ALS, Autism, Rett syndrome, and Fragile X syndrome.
“Angelman syndrome is one of the most promising fields of scientific research and on the cusp of potential treatments to reverse the debilitating symptoms. FAST proposes that with proper funding, a cure is achievable within 5 years,” Eslin adds. “Once my husband and I heard about the amazing scientific advancements, we knew we had to do something for our daughter and everyone else suffering from this disease.”
For more information about sponsorships or tickets, contact Eslin at eslin.guice@gmail.com or call 305-924-1601 and visit www.cureangelman.org/angelsforangels.
FAST (Foundation for Angelman Syndrome Therapeutics) is the largest non-governmental funder of Angelman-specific research in the world. FAST is run by an all-volunteer board of AS parents and professionals dedicated to finding a cure for AS and related disorders through the funding of an aggressive research agenda. The foundation is committed to assisting individuals living with Angelman syndrome to realize their full potential and quality of life. 100% of proceeds from Angels for Angels Charity Ball will go to FAST and will immediately be used to fund research and clinical trials.
