Williams Syndrome Association

The Williams Syndrome Association has offered us valuable information and connections with other families who have children with the same rare disorder as our son for many years. They are a lifeline for us. Our son’s doctors use their website to learn more and provide him with optimal care. His teachers find educational stategies. And we, his parents, find support. Thank you for all you do!

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.

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.

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.

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.

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.

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.

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.

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

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.

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.

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

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.

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.

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

My son was diagnosed with Williams Syndrome by his cardiologist at 3 years old. I was terrified. The first place our doctor told us to go was the Williams Syndrome Association. There I found an organization of caring people dedicated to helping families cope with all aspects of WS, providing valuable and accurate information about WS, spreading awareness in the educational and medical communities, supporting cutting edge research into the various medical and developmental issues of WS and connecting families so that they could share their experiences and resources. Through the WSA I met many other wonderful families on facebook. I now belong to a fabulous support group which is supported by the WSA. I am continually impressed by this organization which has been the most useful resource for WS I have found. They recently celebrated 30 years spent working to enhance the lives of those with Williams Syndrome...of all ages. I will forever be grateful to the WSA for all they have done and continue to do.

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.

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.

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!

The Williams Syndrome Association! Celebrating 30 years of supporting families of children and loved ones with WS. Thank you for always being there for us, and helping to educate doctors, therapists and everyone involved with the care of our son and everyone else with WS! Even before there was a definitve diagnosis for WS, the WSA was there!! 30 years of conventions, medical conferences, camps, amazing support, awareness and more! You are the best!!!! You have made such a difference in so many lives!!

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.