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May 2018

 

 

 

 

In this issue:

Awareness Month 2018

Updated Privacy Policy

National Convention 2018 


Awareness Month 2018

We have 38 walks/runs and awareness events around the country this year in our ninth official Williams syndrome awareness month.  There are walks and runs in 21 states, and our goal is to have at least 10,000 attendees. But the walks/run are just one piece of our awareness month activities.  Many others throughout the country (and overseas!) are conducting their own campaigns to raise awareness and funds for programming and research and we thank you all. Unique fundraisers and awareness include making and selling amazing crafts, coordinating personal fundraisers, making requests to cities and states to officially proclaim May as WS Awareness Month, working with a city and lighting designers to light up bridges with our colors, posting amazing stories on social media, giving presentations to your local organizations and at schools, and so much more.  This list is long and we greatly appreciate all of your efforts to make WS Awareness month very special this year!


Looking for resources and ideas for awareness month? Check out our blog for ideas, links, frames for social media (made and donated by WS mom Jessica Connor) hashtags and more. Click here.

It is (we hope) a wonderful coincidence that Ellen Degeneres is conducting a promotion this season that is "made to order" for individuals with Williams syndrome. We (and many of our families) feel like our kids would be perfect guests for the Ellen Degeneres Show and some amazing stories have been posted to no avail in attempts to get her attention. Ellen is partnering iwith Cheerios for a promotion called One Million Acts of Good. Through a special social media campaign using the hashtags #GoodGoesRound and #OneMillionActsofGood, you can post stories about how the community is helping our families, how others have helped your child, or how your child has touched others. We think individuals who have Williams syndrome are a wonderful example of "good" and more people need to know about it.  The campaign also provides the opportunity to write your story and send it directly to the show via their site.  You can even include a picture or a video.  Help us introduce Ellen to our "really cool kids"!  Click the image of Ellen below to be directed to the page to submit your story. Join the movement, and your story could end up on the show, on Ellen's social media, or in a web video! From holding the door open for a stranger to planting a tree – Ellen tells us that no act of good is too small! Ellen and Cheerios want this to be a hub for inspiring and encouraging good! So send your stories about your children, their teachers, volunteers, doctors, or friends --anyone doing great things in the world and for our WS community.  We look forward to seeing your posts.

 

 

 

 


WSA Privacy Policy Recently Updated!

We know that privacy concerns are front and center these days, especially in the wake of Facebook policies being in the spotlight and GDPR laws going into effect later this month. At the Williams Syndrome Association (WSA), your privacy is important to us. We are committed to protecting your privacy at all times, in all situations. The information we collect about you when you become a member, donor or constituent, is only used to process your membership, order, donation, or request for information and referrals, for our proper administration of the WSA and to provide you member benefits. We never share your data, nor does The WSA Registry. Read our full updated policy here.


National Convention 2018

  

Still Time To Register! Regular prices through May 15. Late registration fees apply May 16-June 30.

WSA National Convention – July 11-14, 2018
 
Marriott – Waterfront Hotel, Baltimore, MD
 
The convention is just eight weeks away and our committee and staff are working hard to organize many enriching and fun activities for July 11 - 14 in the Inner Harbor area of Baltimore for #SetSail2018!  Throughout the 60 educational sessions, parents will have the opportunity to join leading experts and members of the scientific community as they share medical, educational and therapeutic developments that can change the trajectory of your child’s life, as well as network and socialize with other families. 
 

There are several new features to this year's convention.  One of the most exciting - especially for families of young children with WS, but with something for everyone, is the Bee Strong Therapy Initiative in honor of Everly Rovinsky.  
Founded by WS Mom, Christie Rovinsky, the initiative will offer an incredible menu of FREE, hands-on, highly interactive opportunities for the entire family with world-class therapists familiar with WS.  
Examples of what this initiative will include are:
  • Hands-on aquatic therapy in the pool with a renowned aqua therapist
  • Lunch and Learn sessions with a pediatric sleep expert
  • Self-care for Moms and Dads: yoga sessions and social events
  • “Make and Take” sessions to bring therapeutic tools home 
  • Lunch and Learn Sessions with a Speech Therapist, BCBA, and tutor who are experienced working with children with WS
Special Needs trust reviews will also be held at the convention.  Event sign-ups for both therapy iniative sessions and the trust reviews will be distributed to all convention attendees in the coming days.

 

IEP Sessions:
Throughout each day there will be an IEP Clinic where you can schedule a private appointment with an experienced advocate to review your child's current IEP. These free 45 minute one-on-one sessions with advocacy experts will help you review your child’s IEP and get general suggestions for making current goals stronger, more appropriate goals to add, requesting services, etc. Sessions are available throughout the day, every day! Convention registrants can pre-register for an advocate session here

Accommodations: 
The WSA block of rooms at the Marriott is sold out.  Any available rooms will be reserved at the current market rate. There are still a limited number of rooms available at WSA rates at Homewood Suites and Hyatt Place Hotel,  and a new block of rooms is available at the Hilton Garden Inn.  The Hilton Garden Inn room block has double rooms available. All hotel informaton can be found here

Inquiring minds want to know:
What one issue (medical, educational, financial, emotional) is keeping you up at night? Email your issue to info@williams-syndrome.org and our convention speakers will do their best to include it in the appropriate session.

Parking:
Parking at hotels in cities can be expensive and the WSA is working on securing alternative parking options for convention attendees.  Future convention updates will contain parking options.
 
Programs for Teens and Adults
The daily activities for individuals with WS 13 and older will be posted on our website this week. Adults attending sessions can always view the convention agenda here

WE ARE LOOKING FORWARD TO SEEING YOU IN JULY! 

For more information on the 2018 national convention, visit our convention page.


 

 

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