Bi-Monthly eNews Update from the WSA

Time has flown since the WSA first designated May 9-15 as Williams Syndrome Awareness Week in 2010. And thanks to hundreds of volunteers across the United States and in countries as far afield as Japan, Australia and South Africa, community awareness of Williams syndrome has grown dramatically. In 2010, our goal was 25 events and as much media coverage as possible. That first year, our volunteers hosted about 40 events and Williams syndrome was "in the news" more in just the few weeks surrounding WS Awareness Week, than it had been in the previous 20 years.

This year there are 120 events being held throughout the country - so many that it was impossible to hold them all in a week. In fact, Williams Syndrome Awareness Month is already spilling into June, and in fact, families are not waiting for a particular week or month to teach folks more about Williams syndrome. Awareness events are taking place year-round, and they are making a difference. Where once we could take questioning looks and blank stares as a given in response to mentioning our children's diagnosis of Williams syndrome, there is now a fair chance that the person we are talking to might say - "I've heard about that", or "I read about that". What a difference a few short years can make!

H. RES. 194

Earlier this year, the WSA declared May as Williams Syndrome Awareness Month, and asked for your support to sign a petition requesting federal recognition of Williams Syndrome Awareness. With your help, we collected 5500 signatures.

Unfortunately, that wasn't enough to get the President's attention. The Administration now requires that at least 25,000 signatures be collected within 30 days. But there is still good news. House Resolution 194 recognizing May as Williams Syndrome Awareness Month will be introduced next week by Congressman James Moran (D-VA). You can read the text of the resolution here.

There are Many Ways to Raise Awareness

School display board

Although the "Walk for Williams" started our Awareness Initiative and is a hallmark of the campaign, there are many, many ways to raise awareness. This year, there are 40 walks being held around the country. There are also: Marathon teams, State Government meetings, Embraceable Premiers, "Word about Williams" distributions in churches, clubs and schools, Classroom presentations, Letter Campaigns, Wristband Campaigns, "Wheels for Williams" car show, Dine/Shop to donate events, Library Displays, Family Picnics, and combination fundraising/awareness events as varied as College Soccer Teams wearing WS arm

Dine to donate event

bands and holding clinics for young athletes with proceeds going to the WSA, to Zumba-thons and Jewelry sales.

Contact the national office for more ideas, and to learn how we can help make hosting an event a lot easier than you may think.

Why Raise Awareness?

The simple answer is because not enough people know about Williams syndrome, and with knowledge comes strength, and wisdom, along with the funding necessary to support the people who can help us find answers, and enrich lives for those with Williams syndrome.

Strength in numbers will help Williams syndrome to "get attention" from those who can help - scientists, foundations, educators and philanthropists. There is still so much to learn. For example, Recent advances in diagnostic techniques are helping to diagnose individuals with WS at a younger age, and to learn more about the specific deletion that is present. However, it is estimated that a large percentage of the middle-aged and older population of adults with WS are still undiagnosed or misdiagnosed. We now know that adults with WS may experience both medical and neurological changes. It is vitally important to increase awareness in order to find adults who are undiagnosed or misdiagnosed, and help to insure that they are receiving the professional support they need.

We are learning more about Williams syndrome every day, and with each new discovery comes the possibility that it will help clear the way for even bigger and better advances to help our children.

Widespread knowledge will help us gain the wisdom of great thinkers who will "think outside the box" regarding the new possibilities for medical treatments, educational strategies, and life-long well-being for individuals with Williams syndrome. And a growing financial base, will provide opportunities help in every way. Our organization will be able to strengthen current programs, initiate new ones and provide direct financial support to those in need. It will also help us to fund critical research that can make a difference in our children's lives.

Through Awareness Month events, we have received support from our members and their friends and relatives, and still others who have heard or read out Williams syndrome and called to help. We have been able to increase programs and support, in a way that we hadn't thought possible. Fundraising revenues doubled by 2011 and tripled by 2012 - enabling the WSA to provide one million dollars in program support in 2012 and increase our budget for scholarships to camps and post-secondary programs and medical assistance funding to families to more than $100,000 annually. We have also been able to increase support for the WS Registry and WS research to $125,000, increase the number of camp programs available to families and begin Assistive Technology and Housing initiatives that will increase success in the classroom and help families to find assisted and independent living options for their adult children with Williams syndrome.

With your help, WS Awareness Month is making a Difference in countless ways for thousands of individuals. Thank you!