Angelman Syndrome Foundation Walk set for May 18
More than 400 walkers will hit the pavement in Lisle Community Park, 1825 Short St., at 11 a.m. Saturday, May 18, to support the Angelman Syndrome Foundation in its search to find a cure for Angelman Syndrome, a neurodevelopment disorder like autism.
The Chicago Area Walk is part of the ASF National Walk which takes place on the same day in 44 locations throughout the United States. In its 21st year, the ASF National Walk averages more than 10,000 participants, 2,500 volunteers, and raises more than $1 million dollars in support of individuals with Angelman syndrome.
Jon Timbers, coordinator for the Chicago-area walk, has a personal reason for his involvement in the ASF Walk. His nephew James, who is now 5 years old, was diagnosed with Angelman Syndrome at the young age of 2. "As a baby everything seemed fine," says Timber. "But as time went on it was clear that something was wrong when James was not talking or walking. When my brother called me to tell me the doctor's diagnosis, all I could tell my brother was that we would love James and be there as a family every step of the way. I started researching AS and found the ASF and immediately volunteered to help them!
"Now, the National Walk is a family affair for all of us. Each member of my family comes into Chicago to participate in the walk. James diagnosis was bleak, but out of that, we have become a strong and close knit family who wants to do something bigger than ourselves," Timbers said.
According to foundation CEO, Amanda Moore, a parent of a child with AS, the National Walk taking place in Chicago and in 43 other locations around the nation "brings awareness and crucial funds to help us continue supporting our families, our clinics and investing in important research."
Angelman syndrome is caused by the loss of function of a specific gene during fetal development, resulting in severe neurological impairment present at birth and lasting for a lifetime. Symptoms vary and include severe developmental delays, speech impairments, seizures, walking and balance disorders, and frequent laughter and excitability. While there is no definitive count, it is estimated that Angelman syndrome occurs in one in every 15,000 live births.
The dollars raised through the Walk help fund important scientific research projects that seek treatment and a cure for individuals with AS while also providing direct support to families and individuals with the disease.
Angelman Syndrome Foundation is a known leader in both scientific research and direct family support through their AS Clinic Network. By partnering with leading medical and research institutions across the country, the Angelman Syndrome Clinics provide individuals with AS, from birth through adulthood, the comprehensive medical care they need throughout their lifetime. At the clinics, individuals have access to a variety of professionals all specializing in AS: clinical geneticist; neurologist; psychiatrist; psychologist; speech language pathologist; physical/occupational therapist; genetic counselor; social worker; and nutritionist.
The Angelman Syndrome Foundation is a national nonprofit dedicated to improving the lives of individuals with Angelman syndrome and their families through education and information, research and support. Since ASF was officially incorporated in 1992, it has funded 101 research grants totaling $9.5 million. Visit www.angelman.org.