Organization: Williams Syndrome Association
Thousands of children and adults are expected to join the Williams Syndrome Association (WSA) during the month of May to raise awareness for Williams Syndrome (WS), a genetic disorder that remains virtually unknown to the general public, educators and many doctors. Included in the awareness events are 50 walks in cities across the U.S. including New York, St. Louis, Detroit, San Diego and Houston. You can find a complete list here.
The activities are being held to increase community awareness and provide financial support for the Williams Syndrome Association, the nation’s largest support organization for those with WS. Funds will be used to help finance critical research and programs for individuals with Williams syndrome. New research can lead to further insights about the disorder and new treatments for the future. Scientists are particularly interested in cardiovascular disorders and neurodevelopmental issues in Williams syndrome, which may contribute to greater understanding of common problems such as hypertension and anxiety which affect millions of Americans.
Williams syndrome is characterized by medical and developmental delays, cardiovascular disease and learning disabilities. At the same time, people with Williams syndrome often have unique abilities, including advanced verbal skills, highly sociable personalities and an affinity for music. Children with Williams syndrome need costly, ongoing medical care and early interventions that may not be covered by insurance or state funding. Awareness activities during the month of May will also provide funding for the Williams Syndrome Association’s medical emergency fund, which provides financial support directly to families for expenses associated with costly medical treatments for their children.