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July Blog: Awareness--Simply Life-Changing!

The WSA is proud to be celebrating 35 years of support to individuals with Williams syndrome.  When a handful of families first applied for nonprofit status for the Williams Syndrome Association back in 1983, no one really knew how big the WSA might become, or the range of support that the organization could, and would, provide to families. They only knew they wanted to help in every way possible.  
Over the next 25 years, the WSA experienced slow and steady growth.  A professional advisory board was created, and we worked closely with experts in the field to ensure that we had the latest information about medical treatments and educational strategies to help those with Williams syndrome.  We forged alliances with prominent WS research teams and helped to foster better results and new studies through small grants and providing opportunities for researchers to further their studies at regional conferences and national conventions.  We created a music camp and other specialized programs for school age children, teens and young adults with Williams...and much more.  After 25 years we were still small, but we had built a sound infrastructure, established financial stability and become a model among parent organizations for rare conditions.  We were proud of the organization we had become.
And then we started our awareness initiative.  In 2009 we declared the week of May 9-16 as Williams Syndrome Awareness Week.  We thought it would be great to have a few walks and raise some money (our goal was $25,000) for programs and scholarships.  The initiative was successful beyond our wildest expectations – WSA volunteers around the country hosted 42 walks and raised nearly $150,000 for programs and scholarships!  Additionally, we received more media attention for Williams syndrome and the WSA in just one week than we had in the entire 25 years leading up to it.  The response was phenomenal and far more importantly, awareness week in 2009, and awareness month in the years that have, followed have altered the mindset and the momentum of the Association and set us on a new path of support for families.  In fact, awareness month has been simply life-changing!  
Awareness month events have raised nearly $5.5 million dollars and more than 15,000 people are now directly participating nationwide!  Our awareness fundraising success has enabled us to increase our annual scholarships for camps and post-secondary programs from $5,000 to $35,000, and travel assistance for the families of children who require special treatments and surgeries is now $25,000 annually.  Additionally, scholarships for national conventions, which are currently $75,000 per convention, were not available at all in 2009, and we have been able to increase funding for critical research studies from just $30,000 per year to more than $500,000 annually.  
Added to the direct impact of awareness events, stories on network television (20/20!) and in the Wall Street Journal, and this year in Atlantic Monthly as well as local news stories have expanded our awareness reach to hundreds of thousands more.  Williams syndrome is now included with more than just a passing mention in increasing numbers of both medical and educational textbooks.  Although Williams syndrome is not yet a household word, MANY more people are recognizing the term as one they have heard before.  
Our tenth year of awareness brought us, once again, to new heights of success.  Awareness month “unofficially” became awareness season with 42 walks spread over 8 weeks, (with 3 more still to come!)  We have already welcomed 15,000 participants nationwide and raised more than $750,000 for programs and support!  And that was almost entirely through private donations.  But the need is still great!  Ever-evolving specialized programming, scholarships, assistance and research funding needs continue to grow, as well as the need for new expertise and knowledge that only increased awareness can bring. 
Personally, and on behalf of the staff, trustees and nearly 7,000 families in our membership, I would like to extend a very special THANK YOU to our walk, and other volunteer awareness event coordinators and their committees, to every family who hosted an awareness event or special fundraiser, and to each WSA family who attended and encouraged the participation of their families and friends. Each of you has made a difference in the lives of those with Williams syndrome.  We cannot thank you enough for putting your trust in the WSA.   You have empowered us to continue to grow stronger and to help ensure the best and brightest future possible for everyone with Williams syndrome.
--Terry Monkaba, Executive Director, WSA