Over 1.8 million nonprofits and charities for donors, volunteers and funders

2017 Top-Rated Nonprofit

Williams Syndrome Association

Claim This Nonprofit

More Info

Add to Favorites

Share this Nonprofit

Donate

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

26 Stories from Volunteers, Donors & Supporters

General Member of the Public

Rating: 5

Williams Syndrome Association has been here for me since my son was first diagnosed 23 years ago this Oct. They were are very informative with what Williams Syndrome is and when it came time for my son Brian to go to school they had information on what teachers needed to know on how to teach our children. They have the latest news what's going on scientifically and keep us up to date. They have wonderful conferences every year. These are just a few exceptional things I find helpful with the Williams Syndrome Association.

General Member of the Public

Rating: 5

The WSA is a great resource for information, answers, and networking. Parents of newly diagnosed children with Williams Syndrome can get so much help using the resources provided by the WSA.

1

Client Served

Rating: 5

The WSA truly embodies the spirit of the people it serves. Just as people with Williams Syndrome do, it focuses on the positive and capitalizes on it's ability to help others. The organization changes so many lives by funding critical research into a disability that because of it's rarity, doesn't get the public notoriety and press that more common syndromes and diseases get. We have been members or decades and we have never gotten the sense that the Association ever became a big business. It's still all about the people with Williams.

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.

Client Served

Rating: 5

I turned to WSA within days of receiving my child's diagnosis. Before I found WSA I felt totally alone, but was amazed that a well-organized organization existed to provide support, education and friendship! The WSA does an excellent job of keeping it's members informed via e-mail and social media. Their awareness events and walks are fun and great way to bring WS family and friends together.

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.

2

Client Served

Rating: 5

The WSA has been our support and source of knowledge since BEFORE our daughter was diagnosed with WS. I determined that our younger daughter had WS well before her pediatrician would even consider ordering the bloodwork for her, and it's all because of the comprehensive information on this site. I learned what a blessing these kids are, and I was excited to know that our Ellie was part of this community. And that was before the doctor's office told us she had WS!

Throughout the 7 years since Ellie's diagnosis, I STILL reference the WSA's site, not only for myself, but especially for her educators through the years. The information and documented research is incomparable, and her teachers have always welcomed it.

The WSA staff feels like family to us, treating us with their time and kindness. They always help with fundraising awareness and goals; they never hesitate to provide me with handouts and other resources.

The community that the WSA has created is amazing. We have SO many WS friends (well, family, really) across the USA and the world. The summer camps get rave reviews (Ellie has yet to attend one), and the convention that we attended last summer was so much fun - and educational!

I don't know what I would do without the WSA helping me advocate for our daughter!

Client Served

Rating: 5

As a parent of a child (now young adult) with WS, I continually give thanks for the work of the WSA. Our son was diagnosed before information was available on the web -- I remember how important the stack of articles I received in the mail from the WSA were to us. Hardly anyone we knew (including our doctors) knew much about this condition.

We've been to nearly every national WS convention since our son was diagnosed. These have provided us with invaluable information for raising and educating our child. As time goes by, these gatherings are more and more important to our son with WS who enjoys the community and camaraderie -- and being around people who understand him.

Along the way, we've learned much through the WS newsletters and the support network. And we appreciate being able to contact the national office for help when we come across an issue with our son that has us all flummoxed. The WSA has made a huge difference in our life and the lives of all those with WS, and those who love them.

General Member of the Public

Rating: 5

I gave this nonprofit 5 stars because it's personal for me. I have known a lot of friends and it's dear to my heart because of this disease. To know that there are similar people who are dealing with this like me is a big deal. They are family and friends that I could not live without and they have a lot of informative meetings that help me in every way.

Client Served

Rating: 5

Great source of information for families who have someone living with WS.

Client Served

Rating: 5

Since my daughter's diagnosis, the Williams Syndrome Association has offered information, support, and hope. For a small non-profit, it offers an impressive spectrum of services, from funding cutting-edge research, providing WS-specific educational resources, and raising awareness through a variety of events. We are so grateful for all that the WSA does for our family.

General Member of the Public

Rating: 5

My grandson has Williams Syndrome and the WSA has a wealth of information available on their website that I have found helpful when looking for direction. Thanks WSA!

1

Client Served

Rating: 5

The WSA provides a critical platform for families to connect, creates innovative educational tools, and provides support to families during difficult times. The WSA also funds and shares the latest research and best practices so that our kids receive the best medical care and best education possible. If it weren't for the WSA I would have been so lost 8 years ago when my daughter was first diagnosed with Williams syndrome. The support and resources that the WSA has provided our family is indescribable. We are so fortunate to have the WSA's support and resources available to help us on this journey.

General Member of the Public

Rating: 5

This organization provides educational materials for parents, doctors and educators. Also, every two years they put on a convention that is attended by over 1200 people. This convention is professionally run and extremely informative for the attendees.

General Member of the Public

Rating: 5

Extremely helpful to all parents with children/ adults with Williams Syndrome. Always just a call away. Learned more than from doctors

Client Served

Rating: 5

When my granddaughter was diagnosed at birth, I felt so clueless, helpless and scared. I started researching and the association provided a lot of information. When my son and daughter-in-law went to at conference, I was able to go. It was a tremendous experience where I was able to learn a lot and meet a lot of WS families. When I found that Emma would not need open heart surgery, I cried for hours. I love getting posts on Facebook, especially from families who have just got the diagnosis and need a hug and a kiss. Meanwhile my Emma is now 4. She has overcome a lot of hurdles. She brings such joy and love to our family. I donate every year and buy lots of stuff on Amazon smiles. Thank you WSA for all you do! Here is a picture of my beautiful Emma.

Client Served

Rating: 4

Our family have been members since the l980's. In that time the organization has helped answer many questions and concerns regarding this little known syndrome. The association now focuses mostly on younger children, which is so important for young families receiving a diagnosis of Williams Syndrome. The information, and help, and advice available today is so important. Helping newly diagnosed on the road to understanding and help.

Client Served

Rating: 5

WSA is phonomenal providing information and programming for the Williams Syndrome population. It has grown with them and responsive to their needs and their families needs. We would be lost without them.

Client Served

Rating: 5

When our son was recently diagnosed with Williams Syndrome, a fairly rare genetic disorder, we didn't know where to to turn. But there was one source that we trusted while avoiding internet forums and less trustworthy websites: the Williams Syndrome Association. Their multimedia work with families was very comforting in the days after our son's diagnosis and the medical information helped us understand things between appointments. Finally, we attended our first Williams Syndrome Walk this past May, organized by the WSA with assistance from parents and volunteers. It was the first time we were able to meet such a large group of individuals with WS and their families. It meant the world to us.

2 Rebecca2345678

Client Served

Rating: 5

The Williams Syndrome Association has been a wonderful source of information and support to our family over the past 8 years.