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Who is the WSA

The Williams Syndrome Association’s (WSA) mission is to advance the interests of all individuals with Williams syndrome throughout their lifespan by providing programming and resources, supporting research, promoting partnerships and connections, and ensuring that the infrastructure of the organization has the capacity to lead our community toward its goals.

Our vision is that all individuals with Williams syndrome have the support they need throughout their lifespan to live healthy, self-directed, productive, and meaningful lives.  In order to achieve this vision, individuals with Williams syndrome must be fully included in educational, work, and community settings. 

We recognize that individuals with WS have sometimes been excluded at school, in the work place, and in their communities.  We also recognize that supports and services often focus on what individuals with WS cannot do, rather than their strengths, gifts, and interests.

The WSA upholds the following positions on inclusion. We believe that: 

  • everyone benefits when individuals with WS are meaningfully included in educational, work, and community settings 
  • individuals with WS should receive all necessary supports and services to fully participate in their family lives, communities, and society as a whole
  • high expectations should be the norm, and that individuals with WS and their families should decide how they best learn, work, and enjoy social settings
  • “inclusion” is not one-size-fits-all, and will look different for each family based on each individual’s desires and needs
  • inclusion creates a sense of belonging in society, meaningful relationships, and opportunities to achieve dreams

For our five-year strategic plan, click here

We also honor our mission by:

  • Providing information and emotional support to individuals with characteristics of Williams syndrome, their families, and the professionals who work with them
  • Developing programs and services to help build strengths and meet challenges from early childhood through adulthood
  • Increasing public awareness and understanding of Williams syndrome
  • Encouraging and supporting research into a wide range of issues related to Williams syndrome

The Williams Syndrome Association (WSA) was formed in 1982 by, and for, families of individuals with Williams syndrome.

The WSA is the most comprehensive resource for people and families living with Williams syndrome as well as doctors, researchers and educators.  The WSA provides resources, support and the latest medical information to help your child today and throughout his/her life.  By joining, you’ll become part of the largest organization dedicated to improving the lives of people living with Williams syndrome.

No matter the age or stage of your family member with WS, you are not alone.  The WSA offers support and will help you navigate the challenges from diagnosis through adulthood.

If your child exhibits the following characteristics, he or she may have Williams syndrome.  

  • Medical – Heart or blood vessel problems (narrowing in aorta or pulmonary arteries), hypercalcemia (elevated blood calcium levels), low birth weight/slow weight gain, colic during infancy, kidney abnormalities, musculoskeletal problems (low muscle tone/joint laxity, joint stiffness) and feeding problems.
  • Physical – Characteristic facial appearances that in young children include a small upturned nose, wide mouth, full lips, small chin and puffiness around the eyes.
  • Personality – Overly friendly, excessively social personality and relatively strong expressive language skills.
  • Developmental – Developmental delays, learning disabilities, attention deficit hyperactivity disorder. 

The WSA provides the resources and referrals you need now, and a strong and supportive community with which to connect throughout your and your child’s life.

We create a roadmap to help you navigate challenges – it includes answers to common questions, a step-by-step guide, information about WS clinics across the country and best practices for age-appropriate interventions.

Active involvement with the WSA community can provide vital, day-to-day support.  The WSA has a small paid staff and many volunteers who help us organize events and support families in communities nationwide. 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.

Whether you have been living with WS for decades or days, sharing your experiences and insights can help you and other families.

Our community is small and geographically dispersed.  www.williams-syndrome.org and your own networks (in-person and online) are ideal ways to connect and share information at any time.

Statement of non-discrimination:

The Williams Syndrome Association does not discriminate on the basis of race, color, religion (creed), gender, gender expression, age, national origin (ancestry), disability, marital status, sexual orientation, political affiliation, or military status, in any of its employment or membership activities or operations. These activities include, but are not limited to, hiring and firing of staff, our membership, selection of volunteers and vendors, and provision of services. We are committed to providing an inclusive and welcoming environment for all members of our staff, members of the association and volunteers, research, education and other partners, and vendors.

Find out more about the WSA