Membership in the WSA provides many benefits. Members include individuals with Williams syndrome, their families and friends and medical and educational professionals. Anyone interested in learning more about Williams syndrome can benefit from membership in the WSA.
Heart to Heart is the newsletter of the Williams Syndrome Association. Heart to Heart is widely acclaimed among disabilities associations, and the professionals working with WS, as one of the most informative and worthwhile support publications available. The publication is distributed electronically and in printed form.
Bi-monthly eNews versions contain association news, special information on events and other timely information. At least twice yearly, special editions are published on educational strategies, research and medical treatment updates, strategies for adults with Williams syndrome and much more. Special editions are distributed electronically to all members, and in printed form to all those with standard or deluxe memberships.
Biennial National Convention and International Professional Conference
The WSA hosts a convention every two years in locations around the country. The 4-5 day meeting is the largest and most comprehensive meeting on Williams syndrome available. It is attended by families and professionals from throughout the United States and many other countries. The event includes an exhibit fair, more than 50 educational sessions on WIlliams syndrome, child care for very young children, camps and special day programs for school age children and teens, programs specifically for adults with WS, opportunities to participate in ongoing research and evening programs. Speakers at the convention are experts from around the world on Williams syndrome who can help you learn new ways to help your child reach his or her full potential. WSA members enjoy discounted convention fees and scholarships are available.
The WSA also hosts the largest International Professional Conference on Williams syndrome. The special 2-day meeting is held immediately before the Family convention and draws members of the WS Research Community worldwide. Researchers share the latest findings on Williams syndrome and strategize about important "next steps" and collaborations that may lead to new information on WS.
Local resource information
The WSA has more than 25 Regional Chairpersons throughout the United States. Regional Chairs are volunteers who work to gather and distribute local resource information regarding medical evaluations, educational program availability, camps, recreation programs and other enrichment opportunities etc.
Regional Chairpeople, state representatives and the national office work to find experienced professionals in your area who know about a variety of aspects of Williams syndrome and can help you find the "right" professionals to work with your child.
Bi-monthly webcasts are held on a variety of topics of interest to caregivers and professionals. Members of the Williams Syndrome Association's Professional Advisory Board and other known experts in the field provide the latest information to members followed by a facilitated Q & A session.
In addition to providing local resource information, regional chairs work hard to insure that a variety of social and educational events are are held throughout the country each year to provide families with the opportunity to meet and talk in a relaxed and informal atmosphere, as well as learn from the professionals at 1-2 day conferences. Parent to parent networking helps insure that families do not feel "alone" in their journey with Williams syndrome, and life-long friendships are often forged among both parents and children at these events, which are often held at local parks and community centers or at a members home.
Social Media Networking
An E-mail list and both regional and national facebook pages provide opportunities for families and professionals from around the world to post questions and comments to each other and receive immediate feedback from others who have "been there," and can provide helpful suggestions, resources, and emotional support.
The WSA has the largest compilation of articles and information on Williams syndrome and related resources, including:
- Up-to-date information for your child's doctors, teachers and therapists regarding the syndrome and strategies for treatment of its characteristics.
- Physical examination protocol for your child's physician.
- Growth, weight and head circumference charts specific to Williams syndrome.
- Compiled information from surveys on medical characteristics, successful educational programs, independent living options and typical employment settings.
- Educational pamphlets containing classroom strategies, testing and evaluation techniques, and the typical cognitive profile.
The WSA has a database of more than 5000 families of individuals with Williams syndrome. With the permission of interested families, the WSA informs its members of important non-WSA events which may be helpful to them, and keeps them apprised of the most important new findings on WS.
WS Registry and Research
The WS Registry is the largest compilation of de-identified medical data on WS available to the reserach community. Families interested in furthering the knowledge of the WS research community are invited to enter medical data on their child with WS and are in turn informed of research studies in which they may want to participate.
The WSA provides funding annually to promote and support clinical research on Williams syndrome. Studies are chosen for support based on their importance to the WS Community at large.