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Awareness Month 2019: A Message from Terry Monkaba

Increased knowledge of Williams syndrome is a year-round priority for the WSA.  Our vision is that all individuals with Williams syndrome will have the support they need throughout their lifespan to live healthy, self-directed, productive and fulfilling lives, and that is a tall order. That’s why each year, during the month of May, we ask that everyone in our community joins us in a special effort to increase awareness in your communities. 

Williams syndrome was first recognized in 1961 but it wasn’t until the mid-80’s that we began to learn about this rare condition.  In the 35 years since then, we have learned a lot about the challenges of Williams syndrome – the mild to severe medical issues, developmental delays, cognitive and behavioral challenges, anxiety and depression.  We’ve also learned about the wonderful gifts – excellent verbal skills, charming and endearing personalities, joyful spirits and musicality.  Despite all that we have learned, we still don’t know nearly enough.  

Working together we have the power to increase awareness of Williams syndrome outside the confines of affected individuals and their families, and that’s extremely important - not just because we want the nation to learn about our wonderful kids and their special gifts, but because it is only through widespread awareness that we can gain the support of brilliant minds in every discipline to help find ways to minimize and overcome the most troubling aspects of Williams syndrome. It is only through more widespread awareness that we can raise the funding to increase critical research studies, create programs and provide the necessary support and resources to ensure that families can help their children realize their full potential.  It is only through more widespread awareness that we can create the opportunities for inclusion in enrichment programs, employment and housing that will enable individuals with Williams syndrome to share their gifts with the world. 

Please join us during the month of May to raise awareness of Williams syndrome – attend a walk in your area, create a special display in your community library, give a presentation at your child’s school, contact with your local media and introduce your son or daughter to their community, create Facebook messages to share…Be creative, have fun and help us increase the knowledge of Williams syndrome, and the programs of the WSA to new heights. For more ideas, click here.  

Together, we can make a difference!

--Terry Monkaba, Executive Director, WSA