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May/June 2014





Another Successful Awareness Month


The WSA celebrated 5 years of awareness activities in the best way possible - with our largest and most successful Awareness Month to date! There were 14 new walk locations this year, 52 in all covering 27 states.  And that was not all.  Volunteers hosted picnics, lemonade stands, family gatherings, and countless other events in communities throughout the country, pushing our reach to well over 10,000 people, and tens of thousands more through media coverage.  This year’s efforts even included a video billboard in New York City’s Times Square, which ran 18 times each day for 76 days.  Over 1 million people pass through Times Square each day!  You can see the billboard here.

With your help, in the 5 years since we began our awareness/fundraising efforts, we have been able to increase the amount of scholarship and financial assistance we provide to families and funding support to WS research teams from $50,000 per year to nearly $250,000.  And we are now able to provide free conferences for educators.  Additionally we have matched the grant awards we received for the assistive technology and housing initiatives to further our reach in those areas.  This year we will be able to do even better!

We want to thank you for helping make this year’s WS Awareness Month a huge success! Whether you hosted or attended an event, shared information on Facebook, made a donation or simply told a passer-by about Williams syndrome, you made a difference. We will ALL share in the benefits of increased awareness, and the special funding that was contributed during many of the events.  Thank you!

Listed below is just a small sample of the wonderful awareness that WS received in the media during the month on May:

The Atlantic: What Happens When You Trust Too Much

Media Planet/Washington Post: Williams Syndrome: Strides Toward Inclusion in the Classroom

Awareness Animation generously donated by HypnoVID WhiteBoard Animation



"Quick Facts" for Teachers

Students with Williams syndrome have extraordinary gifts and unique challenges - in life, and in the classroom.  Their uneven learning profile of verbal strengths coupled with non-verbal difficulties make IQ scores a poor indicator of capability.  Additionally, challenges with filtering out background noise and attending to difficult tasks often require special consideration in the classroom.  On the flip side, their friendly, endearing personality, and excellent verbal skills often result in children with WS becoming the unofficial “Mayor” of the school, known to everyone and loved by many.

The WSA’s new Quick Facts” for Teachers presents the general learning profile for those with Williams syndrome and teaching strategies to help “close the gap” for school-age students, grades KG through12.



New WSA Website Nearly Complete


We have been working diligently with our web development team and WS experts to create a fresh new site for the WSA.  The goal is to provide easier navigation and the most up-to-date content, and we are excited about the new design and our increased ability to enable visitors to find the information and resources they need quickly. The site will have updated and redesigned content areas and features including a new member’s area, blog,  a new event calendar, and much more.  Look for our new website later this summer. 








Additional Resource Added to Website for Those Facing Surgery

We all know that anesthesia can be risky for those with Williams syndrome.  As parents we must take a very proactive role to insure that the medical teams who are treating our children are made aware of the potential risks and are well prepared.  With the help of our professional advisors an additional article has been chosen to add to the "anesthesia concerns" page on the website, and new pre-operative guidelines are being formulated.  Please be sure to download and provide this article on anesthesia risks along with the other items previously posted anytime a procedure requiring anesthesia is scheduled for your child.  Watch for the updated pre-operative guidelines available soon.



2014 National Convention is Underway 

The 2014 International Professional Conference and Family Convention begins this week in Anaheim, California.  There are over 1100 people registered, including 300 individuals with Williams syndrome, ages 1 through 65. Attendees are coming from almost every state in the US as well as Canada, Mexico, Australia, New Zealand, South Africa, Norway, Italy, Peru, Argentina, Japan, Korea, and the United Kingdom.

Held Biennially in July, the Convention and Professional Conference bring together the foremost experts on Williams syndrome and related characteristics to discuss the latest research findings, medical treatments and educational strategies. The week begins with the Professional Conference: Williams Syndrome: Insight from Genetics, Psychology, Neuroscience & Medicine.  Nearly 50 WS researchers will gather at the Hyatt for a poster session and platform presentations on their current studies on WS.  Following the professional conference, the family convention consists of more than sixty educational sessions to provide families with the latest resources and information, while children are entertained and cared for in special age-appropriate programs.

Some of this year’s most popular session topics include estate planning, housing, stranger safety skills, assistive technology, cardiovascular issues, anesthesia concerns, and sensory motor pathways.  You can find a complete list of sessions on our website here. Downloadable recordings of the sessions can be purchased following the Convention.  Watch for information and a link to place your order following the convention. 

If you weren’t able to join us in Garden Grove this summer, mark your calendars for the  2016 convention which will be held July 2- 5, at the Hyatt-Regency in Columbus, Ohio.