In This Issue:
- Virtual #Walk4Williams
- New Facebook Frames
- COVID Update from our Experts
- Education Advice
- Summer Travel Guidelines
- Virtual Convention
- Health and Nutrition
- Eric's Story
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Virtual Walk - 12 Days and Counting!
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On A
ugust 1st, WSA will engage in the "first ever" virtual walk (run, bike, kayak, swim etc.) for Williams syndrome. Replacing nearly 50 in-person walks around the country, #EverywhereWSA is critically important and we hope you will join us.
Our
opening ceremony will air Saturday morning on FB Live at 11:30 a.m. EST. There will be several surprise guests and performances – watch for clues leading up to the event. Mark your calendars, as you don't want to miss it!
Following the opening ceremony, please post videos and photos on Facebook and Instagram of your families in action walking or participating in your favorite activity and use the hashtags
#Walk4Williams and
#EverywhereWSA while sharing your team's donate URL or
wsawareness.org. We will make and share a highlight video of everyone's fun efforts (make sure your posts that day are set to "public").
The WSA has worked hard to keep families informed medically, create new educational resources, and develop virtual options for our camps and convention this year.
With your help, we can ensure that these new programs, as well as the programs that you've come to expect will continue.
Our greatest source of funding, the dollars that came directly from the community during WS Awareness Month each May, were lost in 2020.
Our Virtual
#Walk4Williams
goal is $500,000 – halfway to the cost of a year of full programming. Your participation in this year's virtual walk is critical to ensure there will be no decrease in programming for 2021.
Any donation you can make is greatly appreciated and will help.
Please go to wsawareness.org to make a donation, and consider sharing it with your personal friends and/or FB community today.
For full details:
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Expanding Your Reach is Easier Than You Think
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Families routinely tell us: "I'd love to help but I just don't have a network of friends large enough." NOT TRUE!
Your network is much larger than you think. Check out "The Path
to 28" for 24 ways to expand your network. This colorful path is a great reminder of just how connected and broad your network really is—
Download the game
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Facebook Frames For Virtual Walk
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Looking for a new frame to use with your profile pictures on Facebook? Show your support and spirit for #EverywhereWSA on August 1!
Just search for the names of the frames listed below when you change your profile picture, or, if you see a friend who already has one, like WSA staff member Jessica Cummins, you'll see a button that says "try this frame" when you view theirs. Just pick the one that fits your profile picture best and save!
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COVID-19 - Unknowns Can Complicate Decision-Making
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Many families are having a difficult time deciding how cautious they should be as their communities begin to re-engage. Others are wondering if they should send their children back to school in September. We recently asked our advisors for their guidance. There is no easy answer, but Jessica Waxler MS and Barbara Pober MD, have provided us with information that will help you assess the risks and make your decisions. Read their advice
here
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States and districts are making plans for the fall. Many are discussing a hybrid model combining in person with online instruction –
other states are pushing to have all students in the classroom and some have not yet announced their plans.
What can parents do in the meantime to prepare?
Our education consultant Robin Pegg advises that the most important thing our parents/caregivers can do now is keep careful notes about learning progress or lack thereof, and do NOT agree to ANY decrease in service time due to the pandemic.
In fact, the support actually may need to INCREASE with the changes in instructional methods. Remember that the most important consideration is the child, the child's progress, and supports matching their individual needs, not the logistical needs of the school. It’s hard not knowing what Fall 2020 will look like, but being prepared with detailed notes is always a good idea!
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We've all been staying at home for the safety of our families and our communities, but now that summer is here, is it safe to travel? Doctors working in the Infectious Diseases Division at Massachusetts General Hospital recently released excellent guidelines. Limited travel is still a good idea, but there are many ways to keep safe and enjoy some time away from home.
Choosing places that are wide open without lines and crowds is a primary consideration – one that the Cole family expertly followed on an RV adventure to visit many of our beautiful national parks.
Read Mass General's full guidelines
here.
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Virtual Convention - October 2020
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During the first 2 full weeks of October, the WSA will host an abbreviated, but information-packed virtual convention. Beginning on Monday evening October 6, the highlights include:
- Two or more "large group" session options per weekday evening,
- special opportunities for exclusive small group sessions with our experts on the weekend
- after-school programming for individuals with WS of all ages on weekdays
- evening entertainment on the weekends
- and more!
All programming will be provided at no cost to WSA members. Mark your calendars and plan to join us!
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Many individuals with Williams syndrome have difficulties with their digestive tract, so we are always on the lookout for helpful solutions and suggestions.
Florida Nutritionist Wendy Wesley recently shared an easy and healthy recipe for "oatmeal fiber bombs" that can help. WSA families in Florida have tried the recipe and report that the Oatmeal bombs not only work great –
they taste great too!
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Parent Memoir: Tribute to Eric
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Eric Hill was born in the 60's, when an early diagnosis for Williams syndrome was impossible – there was no testing and it had just been discovered in Europe and New Zealand in 1961. No one knew Eric had Williams syndrome until he was a teen. Carol Hill, mom to Eric, has written a memoir about her son, how he touched so many, and what it was like to lose him in 2015.
In the memoir, Carol details the amazing coincidence that led to the family learned of the Williams Syndrome Association. Carol's husband had a business trip in San Diego, and the family accompanied him from Massachusetts. They saw signs near their hotel for a convention, which turned out to be the very first WSA convention, and that wonderful coincidence led to a lifelong connection with the WSA for resources and information.
Eric loved music, and Carol remembers that he loved singing with his family – and his job was to keep them all on pitch! He was involved with a local workshop for those with disabilities, and through them, enjoyed performing in musicals. His two favorites were
Sound of Music, in which he played Captain Von Trapp, and
Wizard of Oz, where he stole the show as the Cowardly Lion.
Carol tells us that the last months of his life were very special. He had cancer and was in hospice care –
adored by staff there as well as the respite staff. She regrets not having video of him singing, but cherishes the time. A grief workshop suggested that she write the story; she never thought it would be published, but their story turned into this special memoir.
The book is
available now through retailers such as Barnes and Noble and other booksellers.
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Dr. Pober and the WSA: Knowledge is Power
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The Williams Syndrome Association is a national 501(c)(3) nonprofit organization dedicated to
ensuring that all individuals with Williams syndrome have the support they need throughout
their lifespan to live healthy, self-directed, productive and meaningful lives.
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