From the WSA ED, Dr. Mary
It is May, and spring has indeed sprung! The WSA is blossoming with programs, events, and opportunities for our members to get out, connect and spread awareness of Williams syndrome (WS)!
Williams Syndrome Awareness Month is in full swing and with your help we have been creating awareness nationwide. Just as an example, the WSA was an exhibitor at the national Developmental Disabilities Nurses Association annual conference and at Nathaniel's Hope Make ‘m Smile, one of Florida's largest events for individuals who experience a developmental disability and their families. Everywhere we go, we are met with enthusiastic inquiries about the unique experience of living with and caring for those with Williams syndrome.
As we celebrate Awareness Month, I think it is important to remember that awareness can look many different ways. Each Walk for Awareness in communities around the country has its unique flavor reflecting their specific geography and cultures. A quiet walk through the Montana woods while wearing a WSA t-shirt can be as powerful a statement as a gathering of thousands at a block party in a big city.
Friends and family of Spencer Hughes welcomed hundreds of truck and car enthusiasts to Lake Lou Yeager in Litchfield, IL, to remember his life. Our Director of Family Support, Joel Liestman, was on hand to answer questions about WS and take part in this wonderful celebration. Before the Hughes family and Spencer’s friends decided to create the Lake Lou Car and Truck Show, the idea of a park filled with fancy trucks and classic cars would not have occurred to me as a way of growing awareness of Williams syndrome. But this was a community Spencer loved, and they loved him back, and in turn, WS awareness grows.
It’s always good to remember that large awareness events - like the lighting of a bridge or concert series - are amazing, but so is wearing a WSA shirt to school or to work, creating posts on social media highlighting someone you know, or having a one-on-one conversation with a person who looks at you or your child with curiosity. Awareness can come in all shapes and sizes. You can directly have an impact on awareness this month throughout the year by even some of the smallest acts. Ongoing efforts to increase awareness can make immeasurable differences by improving early intervention, medical care, enrichment activities, and the overall lives of individuals with WS. Awareness creates understanding. And understanding encourages acceptance. Have a fantastic Williams Syndrome Awareness Month, and I look forward to seeing how you spread the word about WS!
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2023 Walk for Williams Tee
You can order your 2023 Walk for Williams Tees HERE!
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Upcoming Events - Highlights
Check out the highlighted events below - you can find more events and all of the Awareness Month events at our website on the events page!
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Saturday, May 20th
WSA Pittsburgh PA Walk 2023
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Saturday, May 20th
WSA Holland OH
Walk 2023
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Saturday, May 20th
WSA Kentucky
Walk 2023
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Saturday, May 20th
Daria's Donut Dash 2023
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Sunday, May 21st
WSA Philadelphia PA
Walk 2023
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Sunday, May 21st
WSA Chicago Block Party 2023
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New Address Alert
Our goal at the WSA is to ensure as many of our resources as possible are utilized to support our wonderful Williams syndrome community. One of the ways we realized we could move some overhead costs to programming which supports, impacts, and reaches our community at large across the country is to move the Williams Syndrome Association to a remote operating model.
This move is also a way to have a team of staff that is best representative of all of you spread out across the country and will allow us to attend more local in-person events, activities, conferences, and conventions without having to incur as much associated travel costs. We know there will still be a need at times to send physical mail to the WSA, so we decided to go back to our roots! The WSA was incorporated in New Jersey, so we’re excited to share new our mailing address, where our mail will be safely processed and organized:
Williams Syndrome Association
243 Broadway #9188
Newark, NJ 07104
And don’t worry – our phone number will stay the same! You can contact us at 248-244-2229 or 800-806-1871. Our enhanced phone system allows you to directly reach who you need - by topic or name of staff member. You can also reach us by email.
Please let us know if you have any further questions or concerns.
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WSA Podcast: The Starry-Eyed Effect
The Williams Syndrome Association has a PODCAST! On each episode of The Starry-Eyed Effect, hosts Jennifer Keeton and Stephanie Caron have real conversations with people with WS about the ups and downs of living with a rare genetic condition. They also talk to advocates, professionals, and caregivers who dedicate their time and energy to making the world a better place for the community we love.
This week, episode 1 guest Brendan Lemieux is now episode 8 guest host! He and Jen talk to the President of the Canadian Association for Williams Syndrome (CAWS), Melanie Côté, about her journey to create real job opportunities for people with developmental disabilities by creating her own donut shop, Do Good Donuts. Then they're joined by Joanne and Morgan Jane Starkman. Joanne and her husband created Innersense Organic Beauty, a line of all-natural haircare products. Morgan is the Director of Joy for Innersense, and once you meet her, you'll see why!
Follow us on our Facebook page. Rate and subscribe to our channels on YouTube and Apple Podcasts - or wherever you get your podcast delights!
The video version of the podcast is available on the WSA channel on YouTube.
Interested in being a guest or have a question for the hosts? Email us at podcast@williams-syndrome.org
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Education Corner
Meet the WSA's IEP/Transition Consultant
Michelle Self, PhD.
Michelle has worked for over 20 years with families of students with Williams syndrome to help them access an appropriate education and achieve their full potential. She started her career as a Materials Engineer in quality assurance, and then she opted for a career change and completed a PhD in Curriculum and Instruction with an emphasis in Special Education. She has worked as an adjunct professor at Bowling Green State University teaching junior-level students how to assess all types of learners, to write effective IEPs, and to assist in students’ transition from high school. At the same time, she regularly consulted with hundreds of families across the country.
Michelle has spoken at Williams Syndrome Association conferences on a variety of education topics since 2006. Her expertise is in early childhood, especially determining the best accommodations for students, assisting with transitions into junior high and high school, and planning for the future.
She and her husband Bill spent most of their lives in Ohio before moving to Celebration, Florida, a year ago so their son with Williams syndrome could fulfill his vision of working at Disney World. They have another son, Bill, and daughter-in-law, Alex, both of whom volunteer with children at the Williams syndrome camps and conferences.
Michelle looks forward to working with more families through phone consultations for IEP reviews and attending IEP meetings. Contact her at mself@williams-syndrome.org to set up your consultation.
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Partner Spotlight: Innersense Organic Beauty
Sharing the hair love for many years, our partner Innersense Organic Beauty continues to provide the WSA with sponsorships and financial contributions throughout the year. Year after year.
Expanding on its already extensive support of the WSA, Innersense is also building a partnership with the WSA through its affiliate program! Click here or on the image below to start shopping while supporting the WSA.
The positive impact of the Starkman Family (pictured above) who founded and runs Innersense Organic Beauty is profound in our community and beyond. Read the Innersense Impact Report.
Use this code: LOVEWSA for 15% savings on your first purchase from Innersense Organic Beauty. *Note this code only works on your first purchase and for shipping within the US only.
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From the WSA Director of Family Support, Joel
As Director of Family Support, my March was like Ralph Waldo Emerson describing the March weather: “savage and serene in one hour.” Though it was a crazy whirlwind of a month, I’m grateful to have met so many families and individuals from our Williams syndrome community.
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As a lifelong Minnesotan, I know from experience that traveling across Wisconsin in early March is a tricky proposition. Fortunately, the weather cooperated, and I attended a WS Family Game Night in Osh Kosh. Seeing our WS family at all points in their lifespans is always fantastic. The babies were beautiful, and the adults were rolling with stories making it a treat of a night. And cheese. I had to get cheese.
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A couple of days later, I was off for my first-ever camp...not just with people with WS, but my first camp of any kind ever! What an awesome group to spend a week with. Camp Blue Skies, located at Camp Twin Lakes in Georgia, is everything we should want for adults with WS: great leaders, fun activities, good food, and new experiences! Was there dancing? Yes. Live music? You bet. Chances for everyone to challenge themselves and grow in their abilities? Yep…that was there too. | |
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Due to the generous support of committed members of the WSA community, we have scholarship funds available for our 2023 Whispering Trails Therapeutic and Teen Enrichment Summer Camps. The maximum award to offset the cost of camp is up to $750 per awardee. In order to apply for 2023 camp funding, you must:
- Experience Williams syndrome & be between the ages of 6 and 20
- Ages 6-12 will need to be able to attend with a caregiver (no cost for the caregiver)
- Ages 13-20 will need to be able attend independently
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Be a current WSA member (membership is complimentary) Join or renew your membership now
- Have financial need*
*For purposes of these scholarships, financial need means being under 200% of the Federal Poverty Guidelines. For example, Federal Poverty Guidelines for a family of 4 is an income of $30,000/year. Therefore, 200% of the Federal Poverty Guideline for a family of 4 in the 48 contiguous states is an annual income of less than $60,000. If your family meets this criteria, please feel free to apply! Documentation of financial need is not required for application submission but may be requested during the WSA's annual audit.
2023 Whispering Trails Scholarship applications will be accepted May 1 - 30, 2023. Scholarships will be announced and awarded by June 15, 2023. To apply for a 2023 Whispering Trails Summer Camp scholarship, register for camp. The link to apply for a scholarship will be provided during the registration process.
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Whispering Trails Therapeutic Camp Experience:
July 30 - August 3, 2023
Ages 6-12
Camp Twin Lakes in Rutledge, GA
Therapy Camp is a 5-day/4-night program designed for individuals with WS ages 6-12. Campers attend camp with one parent and stay together in cabins with other campers & their parents.
Throughout the week, campers will have the opportunity to participate in a variety of programming led by both WSA and campsite staff.
During the day, campers will take part in various sessions led by our trained therapists (physical therapy, occupational therapy, speech therapy, & music therapy). These sessions will demonstrate best practices for working with young individuals with WS. Campers will also be able to participate in various traditional camp activities, such as archery, biking, boating, cooking, horseback riding, rock wall climbing, swimming, etc.
In the evenings, campers will have the opportunity to perform for their peers, or just help cheer them on! And of course, we will have campfires, s’mores, and lots of music!
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Whispering Trails Teen Camp Experience:
July 30 - August 4, 2023
Ages 13-20
Camp Twin Lakes in Rutledge, GA
Teen Camp is a 6-day/5-night program designed for individuals with WS ages 13-20. Campers attend camp without a parent and stay together in cabins with other campers & counselors.
Throughout the week, campers will have the opportunity to participate in a variety of programming led by both WSA and campsite staff.
The daytime is broken down into scheduled blocks and activity periods. These can involve activities such as art, band, chorus, dance, drama, musical theatre, small musical groups, and rec games. Other traditional camp activities such as archery, biking, boating, cooking, horseback riding, rock wall climbing, swimming, etc. will be scheduled for all campers together with their cabins.
In the evenings, campers will have plenty of opportunities to share in performances with their peers, cheer each other on, hang out by the campfire, eat s’mores, and make lots of music!
The end of the week culminates in a show put on and led by our campers! This is their opportunity to share and show off what they have been working on all week!
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Work or Volunteer at One of Our Camps
The Williams Syndrome Association only accepts applications to work at our camps. For volunteering and working at the non-WSA camps, visit their websites directly.
For all positions at Whispering Trails Music Camp, click the button below to apply.
NOTE: 1) This link is for all staffing positions, including ALL staff & Counselor-in-Training (CIT)/Junior Counselors; 2) Before applying for any staffing position, you will first need to make an account.
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Family Support Network Groups | | |
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Are you looking for ways to connect with other parents/caregivers? Our support groups gather monthly virtually to discuss experiences, share thoughts, and offer support: private "peer-to-peer" groups. Periodically, a medical advisor specializing in the topic may join the discussion.
The topic-specific groups offer a great way to meet with parents/caregivers going through similar experiences. If you haven't had a chance to join, we welcome you to try a group.
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New Groups Added! Learn more about the two new groups added:
WS Grandparent Family Support Group
We know that it takes a team of people to care for a child or adult with Williams syndrome (WS), and grandparents often play a vital role. The WS Grandparent Family Support Group is a place where grandparents can share ideas and experiences, and offer support in navigating the complex family dynamics involved in raising someone with Williams syndrome. The group will be facilitated by Julie Oglesbee, the grandmother of a wonderful young man with WS and an active volunteer raising awareness in her community.
Parents/Caregivers of Only Children with WS
When your only child has Williams syndrome, one of the biggest fears is wondering who will be there for your child after you’re gone. If you are a person with Williams syndrome, life after the stable care of your family can seem daunting and overwhelming. The Only Child Family Support Group will meet monthly to discuss strategies, support anxieties, and share ideas about how to create a community of support that is trustworthy and steadfast. The group facilitators are WSA Director of Family Support Joel Liestman and WSA Board of Trustee member Bill Palmer, who each have an only child with Williams syndrome.
The dates for May Groups are listed below and on the WSA Website. For those planners, June group dates are not linked below but will be on the events page of the WSA Website.
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All groups meet 8-9 PM ET. Click on a group to register. You must register to attend. | | |
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Save the Date:
2024 Phoenix Convention Committee Kickoff Meeting!
August 14th @ 7PM
Hyatt Downtown Phoenix
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Monthly Virtual Adventure Seekers Meeting Zooms
It's time to register for our May 2023 Zooms!
NEW! This year, you'll use the link below that corresponds with the date you'd like to attend to register for the Zoom. You'll register to receive the links every month.
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Join the Adventure Seekers Email List
Are you an adult with Williams syndrome, age 18 or older, or their parent or caregiver, and want to ensure you never miss out on information about our Adventure Seekers program? Be sure to join our Adventure Seekers email list! This is how you'll learn about our monthly virtual meet-ups, trips, learning opportunities, in-person gatherings, and more! Click here or on the "Join Us" image to sign up.
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WSA Office Holiday Closures
The WSA Office will be closed on the following days in May:
Friday, May 26th
Monday, May 29th
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Ann Marie represented the WSA at the Annual Developmental Disabilities Nurses Association Conference in New Orleans in April.
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In April Lacie got to tour the Williams Syndrome Clinic at the National Institute of Health (NIH) in DC and meet with the amazing docs.
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Sarah represented the WSA in Central Florida, by Lake Eola at Make ‘m Smile earlier this month.
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Shop WSA
We are thrilled with our apparel and accessories partnership with Outshine Labels. Outshine Labels, its founder and staff, are part of the Williams syndrome family.
You can purchase your WSA merch by clicking the button below.
70% of all profits generated from the sales will come back to the WSA, benefitting our efforts to continue supporting individuals with Williams syndrome.
Supporting those with Williams syndrome is, and continues to be our foremost priority. We couldn’t have thought of a better organization or platform to partner with than one already amplifying awareness and advocacy in the disability community. For us, that is an absolute win-win.
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Share Your Story
We know there are great things happening in the lives of our friends with Williams syndrome! Please share your stories with us, so we can share them with the world! Click on the button below to find out more and share.
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