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Williams Syndrome Association

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Nonprofit Overview

Causes: Birth Defects & Genetic Diseases, Health

Mission: The Williams Syndrome Association is a non-profit organization that strives to enrich the lives of individuals and families affected by Williams syndrome and similar conditions through support, research and education. The Williams Syndrome Association (WSA) is the most comprehensive resource for people and families living with WS as well as doctors, researchers and educators. The WSA provides the resources and referrals that families need, and a strong and supportive community with which to connect throughout that child’s life. We create a roadmap to help families navigate challenges – providing answers to common questions, a step-by-step guide, information about WS clinics across the country and best practices for age-appropriate interventions.

Results: Since its inception, the WSA has helped nearly 5,000 families of individuals with Williams syndrome.

Programs: The WSA is a volunteer driven organization. We are parents, grandparents, relatives and legal guardians of people with Williams syndrome. We know first-hand the challenges of raising and caring for an individual with special needs. Among the programs and initiatives provided by the WSA are: Family Support. Information, specialist referrals, a research library and best practice guidelines for every phase of life – from diagnosis and early intervention, to planning for life beyond school. Patient and Medical Registry. A connection between families and the research community. This is the single most valuable tool for improving understanding of Williams syndrome and discovering new ways to help children, plan research needs and distill best practices for families and doctors to use. Cutting-edge Research. Funding for initiatives at leading facilities like Yale University, Johns Hopkins University, Massachusetts General Hospital and Stanford University. National Conventions. An educational opportunity for parents and caregivers with special programs for children with WS and their siblings. International Research Symposiums. The bi-annual meeting provides a forum for scientists and doctors to discuss new research findings in Williams syndrome, plan research needs and distill best practices for families and doctors to use. Enrichment Opportunities and Scholarships for Individuals with WS. Workshops and camp programs provide life-changing enrichment experiences. Scholarships for summer and post-secondary programs enable families in need to participate. Sixteen Regions Nationwide. Volunteers host social events and other opportunities for individuals with WS and their families to connect.

Community Stories

2 Stories from Volunteers, Donors & Supporters

Donor

Rating: 5

The WSA has been such an important part of our lives since my granddaughter, was diagnosed with Williams Syndrome. I cannot even remember all of the ways they have been there to support us emotionally and physically on our journey. I had written to them right after we received the diagnosis, and we received such a lovely letter from the president of the Association, Terry Monkaba, helping us to be able to process what we had just been told. Whenever we ran into any health issues, that had to do with Williams Syndrome, I would call them, and they always could answer my questions in an intelligent and caring way. When my granddaughter was facing the possibility of having to undergo a major health procedure, they put us in touch with a leading geneticist, who has been invaluable to us, helping us to be able to handle so many of the different issues that have come up through the last years. The conventions that are held every 2 years, which are sponsored by the Williams Syndrome Association, are of immense help to us as caregivers of children with Williams Syndrome, besides giving us an opportunity to meet and talk with other parents and caregivers of someone with Williams syndrome. They offer scholarships to other Williams Syndrome individuals to go to these conventions, or to be able to attend a music camp with Ws peers. They put funds toward research which is so important to us, as there is still so much not known about WS. They have been there every step of the way to every individual that reaches out to them or that they are made aware of that is affected by Williams Syndrome. This is why we feel it is so crucial to support this amazing group, in any way we can.

Donor

Rating: 5

Williams Syndrome Association (WSA) is fantastic in the many ways it helps individuals and families living with Williams syndrome, a rare genetic condition. WSA effectively uses its network of volunteers, supported by a very small staff, to counsel and advocate on behalf of these individuals and families. I am a grandparent of a child with Williams syndrome, and I have seen first-hand the many ways in which WSA accomplishes its mission. I know of no other organization of similar size that is more effective.