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2015 Issue 2



Relevancy Matters: Access to Grade Level Curriculum Shapes Citizens of the World

Robin Pegg, M.Ed., COTA/L, ATP

What does it mean to be relevant?  Does everyone have an equal opportunity to BE relevant?  They say that what you don't know won't hurt you.  But I'm not so sure they are right.  For individuals with Williams syndrome and other learning differences, what they don't know has a huge impact on their ability to understand the world around them, and, consequently, their ability to engage in relevant social conversations and experiences with their peers.
For instance, in about 3rd to 4th grade... typical students in class are reading "Sarah, Plain & Tall".  They are learning about...

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Williams Syndrome Awareness Month Highlights

Six years ago when we first started talking about the possibility of promoting WS Awareness, none of us ever imagined that we would be able to make the impact we have.  Through the efforts of many wonderful volunteers and their relatives and friends, many thousands of people are learning about Williams syndrome.  Local businesses (and even a few national corporations) are asking how they can help, media attention is growing, and increased funding is helping the WSA provide better programming and support to individuals with WS and their families.  The photos and comments below tell the story of this year’s awareness success.  ENJOY!


You know what I love most about our event? We reached 3 new families! 
Today is the first time I ever met another person with Williams syndrome like me...and I’m 57 years old!
Our walk wasn’t big but as soon as someone besides family walked through the gate, we were a success!
Such a wonderful morning!  Also wonderful to meet some of my Facebook friends for the first time! 



Volunteers - the Heart of the WSA

Jan & Bonnie

Terry Monkaba, Executive Director

Awareness Month is a “Call to Arms” for WSA volunteers.  Any many of you answered our call.   Whether you hosted or attended an event, shared information through Facebook, Twitter or Instagram, made a donation, or simply told a passer-by about Williams syndrome, you made a difference. Thank You!  

The WSA is fortunate to have countless volunteers who do all of these things and more to help raise awareness of Williams syndrome, and support our programs – during awareness month, and throughout the year.  We are extremely grateful to each of you.

In 2014, the WSA was honored to welcome more than 800 volunteers who, in turn, logged more than 13,000 hours on our behalf!  They helped us at the National Convention and throughout Awareness Month.  They lent their assistance at local conferences, fundraisers, and social events. 

Our members are there for us as Trustees and Regional Chairs.  They participate in our special program initiatives and on Board committees.   In fact, volunteers are an integral part of everything we do, providing nearly 2 years of service hours to our membership during just 1 year! 

And those are just the hours we can actively log.  I know that there are many more of you quietly volunteering in your communities to help those with Williams syndrome – talking to parents of newly diagnosed children, brightening someone’s day in the hospital, calling the WSA for resources on behalf of others when language is a barrier... the list goes on. 

It may seem to you individually that your volunteerism is “not a big deal”.  After all, it’s just a few hours out of your day, or week, right?  As you can see from the statistics listed above, together, you are making an extraordinary impact!   You are giving your time and knowledge so that parents of a recently diagnosed child with Williams can sleep a little better, and look at the future with hope; you are providing care and love for children with WS, to enable parents to take advantage of valuable educational programs; you are using your skills as organizers and event hosts and hostesses to help spread awareness of Williams syndrome, and raise funds for critical programs and research; you are doing so many things for the WSA and WSA families that I cannot begin to list them all.  But I know that I am speaking for everyone on my staff, when I tell you that each of you holds a very special place in our hearts, and in the hearts of every family of an individual with Williams syndrome whose lives you touch.

Many of you are parents of a child with Williams syndrome – the very people we are working so hard to support.  Your volunteerism is made even more meaningful because you are taking time from lives that are already overwhelming to help your peers in the WS Community and the WSA. 

Each year during the third week in April, organizations across the nation celebrate their volunteers.  At the WSA, we believe that one week each year is not nearly enough recognition for all that you do.  As the Director of the WSA and far more importantly, as the parent of an individual with Williams syndrome, I think of you and thank you every day.  And I sleep easier each night knowing that together we are doing extraordinary things to help individuals with WS and their families.  Together, we can help insure that each individual will be prepared to meet the challenges of Williams syndrome, and look forward to a future that is brighter now than ever before.

Pictured: WSA Volunteers, Jan Beard & Pam O’Halloran who have collectively logged more than 50 years of volunteer support to the WSA!


WSA Camps and Enrichment Programs

Adventure Seekers

Forty-seven Adventure Seekers (adults with Williams syndrome ages 21 & older) took Branson, Missouri by storm last month.  Not only did they have a great time attending shows, music sessions with local performers, technology sessions with Robin Pegg, dinner with Elvis & Michael Jackson... but more importantly they raised awareness of Williams syndrome in the best possible way. 

Whenever asked (and they were asked everywhere they went) they provided excellent information about Williams syndrome, and just by being themselves they taught the Branson community about their extraordinary gifts and endearing personalities – reading signs on the shuttle about gratuities and stopping to add a tip to the jar; providing an enthusiastic audience for every show; shaking hands and offering heartfelt congratulations and well wishes to every performer they met; thanking each person who provided a hand down as they exited a bus, poured them a beverage or brought them a meal.  It is wonderful to witness our adults in action, and to speak to the folks in the community who can’t help but comment on the “wonderful group of people” they had the privilege to meet.  If you ever need a pick me up, volunteer to help out at an Adventure Seekers event.  You’ll be exhausted when it’s over, but it’s the very best kind of exhaustion!

We were so blessed to have one of your groups have breakfast with us for the last several days. We will truly miss all the morning hugs, smiles & just their cheerful personalities!! We made great new friends such as Catherine, Scott, Sean, Mandy & sooo many others. So... thank you for enriching our lives & sharing your mornings with us!! We hope to see you all again soon!!

Dick Clark’s American Bandstand Grill
Branson, MO



Camp LogosWhispering Trails Music & Enrichment Camp registration is now closed.  Fifty campers from all over the US, Canada and Poland will converge on Camp Nissokone is Oscoda, Michigan in early August to enjoy  a full week of making music and participating in traditional camp activities.  This year’s theme is “out of This World”!

New at camp this summer:  We are excited to announce a new partnership with Beamz – creators of an interactive music system that uses laser beams and adaptive devices to trigger musical instruments, sound effects, songs and more.  Beamz enables music making quickly and easily and is a great tool for skill development, learning and therapy.   Our partnership with Beamz and Share Your Blessings will enable us to provide Beamz instruments to families at reduced rates and even as gifts for those in need.

There is still room in our Therapeutic Camp for young campers ages 6-12, and at Camp Krem (for teens & young adults).  Call the WSA office today or click here to apply online.


Save the Date for the 2016 National Convention: July 3 – 7, 2016

2016 Convention Logo"Williams Syndrome: The Heart of it All"  13 Months & Counting....

The committee for convention 2016 in Columbus, Ohio is hard at work creating an experience that will be educational, enriching, and highly informative for all who can attend.   The Hyatt Regency Columbus will begin to accept hotel reservations in August.  Watch for details on pricing, scholarships and programming this fall (Nov-Dec)!

Future Convention locations:
2018: July 10-14  Baltimore Marriott Waterfront (Inner Harbor), Baltimore, Maryland
2020: July 7-11    Hyatt Regency, Phoenix, Arizona

Special Olympics World Games – Let Us Know if You Will Be There!

Special Olympics World Games 2015 LogoDuring the last week of July, approximately 7000 athletes and 3,000 coaches representing 177 countries, along with 30,000 volunteers and an anticipated 500,000 spectators  will converge on Los Angeles for the Special Olympics World Games.

 If your son or daughter will be participating in the games in some way (athlete, torch bearer, cheer leader, entertainer, spectator...) we’d love to know. Perhaps we can find a way to bring everyone together.  And if we can’t do that, we can let all of our Face Book followers know who to cheer extra loud for, or watch on the Special Olympics site.   Here is what we know so far:

  • A group of WSA Canyon Region “Teens & Twenties” will be carrying the torch from Dana Point to Laguna Beach.
  • Teens from the WSA Mid-Atlantic Region are members of the Unified Cheerleading Squads that will be cheering on the athletes
  • A group of 11 Campers from the ACM Lifting Lives Music Camp held annually at the Vanderbilt Kennedy Center will be singing their original song with Hunter Hayes during the family day festivities.


2015 Family Vacation Cruise

20 families are now confirmed!

Norwegian CruiseThere is still time to register for the cruise, until July 1.  The WSA has partnered with Norwegian Cruise lines to bring member families an opportunity to enjoy a cruise at a discounted rate.  Cruise along the Mexican Riviera for a festive 7-day (October 18-25, 2015) vacation. In Cabo San Lucas, be sure to visit El Arco, a stunning rock formation. The beaches in Mazatlan will take you to paradise while you enjoy local, authentic fare. This cruise embarks and returns to Los Angeles, so it's easy to get onboard.

Extended Special: Third and Fourth persons on the cabin cruise for only taxes.  Contact Ossie Arciniega for more information.

For more information download the Cruise Flyer and the Cruise Itenerary.

This cruise is not a WSA hosted event.  For questions or to book your trip, please contact Ossie Arciniega: 858-705-1957 or