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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

16 Stories from Volunteers, Donors & Supporters

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.

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.

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.

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.

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.

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.

3

Client Served

Rating: 5

My almost 4 year old daughter was diagnosed with Williams syndrome when she was only 3 months old. I was totally unaware of Williams syndrome. When I was first told about the array of health and cognitive issues she could possibly experience, I was numb...I asked, why me?...this wasn’t supposed to happen, at least not to me?! I had to take time to mourn the little girl I thought I had brought home from the hospital almost 4 months ago. Grasp what I was just told and soak it all in.

With such a rare condition, it can be a challenge to find information. Although my pediatrician had “heard” of WS, she was not able to offer me much information except for what she found online. Most information found on-line is frightening because there is more written about the extremes. I was determined to do everything I could to provide the best life that I could for my little girl, but it was a struggle finding any real life information from other WS families as well as accurate information from the experts.

I was very fortunate that my developmental pediatrician from Kennedy Kreiger knew exactly where to direct me! She directed me right to the WSA. With the help of the WSA, I was able to connect with local families in my area as well as an amazing Facebook network of families across the country. With their help and guidance I was able to connect with national Williams syndrome experts. I even took her to a the leading researchers for Williams syndrome at the Univ. of Kentucky Medical School where she was examined and tested. This has given me tremendous guidance in the areas we need to be concerned with in her development as well as suggestions on where to go for the proper counseling and therapy.

Without the WSA my path as a newly diagnosed parent would not have been what it is was. To be able to connect with others who live and breath what I live, to have the support network, the plethora of information from others that have had similar experiences, and most importantly to have a place that I know I can reach out to at any given time for the best medical, educational, and emotional advice to help my daughter and the rest of my family is simply indescribable. Their mission is not to find a cure for WS, because there is none, but rather to “enrich the lives of individuals and families affected by William Syndrome and similar conditions through support, research and education.” The WSA is not just an organization, they are more like my extended family. We are a community, who support each other and each others families. It is such a different type of a bond, something that I never would have expected. After finding them I did not feel so alone. They got it and they were there for me! And I can tell... they will be there for me and many, many other families who are finding how much they can benefit from the WSA resources.

The WSA just celebrated their 30th year of helping families and making a difference in the lives of people with Williams syndrome.Every other year the WSA holds a 3 day gathering of more than 1200 research educators, therapists, and various physicians who specialize in this condition, which all of us were so unaware of. We just attended our first convention this past July of 2012 in Boston. The convention offered, in one place an ocean of resources and information to individuals with WS and their families. It was so wonderful to be filled with such important information that pertains to my daughter as well as meeting so many families that I have and will be able to connect with over the internet for support and real life pertinent information. Not every family is as fortunate in having the opportunity to attend and thankfully the WSA does provide scholarship funding for families that may not have the means to attend.

As I mentioned it is so important for me to devote all the time and energy possible in making the best life for both of my kids! I am extremely grateful to the WSA for continuing to play a huge role in helping me do that for my daughter. I truly feel indebted to them.

3

Client Served

Rating: 5

My son was diagnosed with Williams syndrome 20 years ago...never even heard of Williams Syndrome.....my son was in the hospital for failure to thrive...he had not been diagnosed at this point....another mother in the hospital who son had Williams Syndrome recommended that I contact a genetics doctor in Boston ( the mother thought my son had Williams Syndrome). I immediately contacted the doctor and days later my son was diagnosed with Williams Syndrome. 20 years ago there was not a blood test to determine Williams Syndrome...Diagnosis was made through various characteristics of the person. I remember asking the doctor now what, she handed me some papers and a card and said contact the WSA, they can help you with a lot of information and answer your questions. I contacted them and they provided a wealth of information. Additionally they connected me to other families in my area. So 20 years later we are still members of the WSA. Because of the WSA and their dedication to Individuals with Williams Syndrome and their families so many things have changed in the WS community.. There is now a blood test (Fish) to diagnose WS. The WSA works with the top researchers and doctors to help gain knowledge and awareness about Williams Syndrome. The conventions brings doctors who are familiar with WS and provide current information. What I love most about the WSA is they get it....they don't provide weighted blankets or leap pads to select individuals, they don't flood my email with invites to tupperware, avon or scentsy parties, what they provide is knowledge, awareness, path to doctors, WS clinics, networking, social events, conventions, research studies, scholarships, all the ways to help enhance the lives of the greater Williams Syndrome Community. One of the best feelings and sure to bring a smile to your face is to see all of the wonderful friendships that our children have made from attending conventions and social events...what a great group of people.

4 Liz goldberg

Client Served

Rating: 5

Our son was 14 months old when we received his WS diagnosis. Without the WSA, I don't know what we would have done! They sent me a Welcome packet, explaining WS, and put us in touch with other families in our area with the same diagnosis. They also put us in touch with top WSA specialists, helped with school, held conferences for us explaining what's going on with research for WS. They are a Wonderful Organization! I would like to Thank them for being there for our son for the past 15 years!

4

Client Served

Rating: 5

When we first received the diagnosis we had no idea what to do next. I thank God every day for the Williams Syndrome Association and the support they have provided me and my family. Because of their close ties with the medical and research community, we have been able to keep up on all the latest developments. I don't know what we would have done without them.