A Message from Board President, Lisette Engel
Hello and Hola!
It is my absolute pleasure to write this welcome message as the new President of the Board of Directors for the Williams Syndrome Association. It is such an honor to serve alongside a wonderful group of dedicated parents, family members, professionals, and staff. I want to take a moment to introduce myself and my son, Jeremy, who is my inspiration for doing this work.
I had never heard of Williams syndrome before Jeremy's diagnosis in October of 2005 when he was 22 months old. As a young parent, I was scared, isolated, and lost. When I finally found the WSA, I read through the resources over and over and memorized every fact. Even 20 years ago, they had a Spanish section, which empowered me to share resources with my whole family. I felt seen. I became dedicated to attending events, educating others, and finding my community. But it wasn't always easy. Even in a connected world, parenting a child with a disability can be profoundly isolating. I joined the board two years ago because I wanted to help change that. I wanted to bring our community closer together and to ramp up our advocacy in an ever-changing environment. And now, here I am as your new President.
I don't take this role lightly. I know the recent losses in our community have brought grief, fear, and hard questions. We are actively engaged in research, and while we don’t have answers yet, we are actively searching and asking the same questions you are. We will share what we learn as soon as we can. You are not alone in this. Please never hesitate to reach out — that's what we're here for.
I am so grateful to the board and staff who are dedicated to addressing gaps in service, protecting our long-term viability, and — most importantly — strengthening the bonds at the heart of this organization: you, the WS community.
This work is only possible with you. I encourage you to get involved — whether that means attending the Convention this summer, joining a committee, or simply reaching out to connect. We cannot do this work without our community.
I look forward to meeting many of you in person at the Convention this summer, and to doing great things together. Please feel free to connect with me anytime — I'm always happy to hear from you. If you're in the DC Area, please reach out! In the meantime, follow me on IG @lisetteo86
Onward!
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Board of Trustees Updates
The WSA Board of Trustees is pleased to announce the appointment of three new members: Jessica Iverson, Jonathan Rousse, and returning member Scott Ottenheimer. These new Trustees were nominated by the Executive Committee to finish out the terms of board members who left this year. Jess and Jonathan will have the opportunity to run for full board positions at the end of this year. Scott is joining us for this year only to support the board as Treasurer, a role in which he previously served.
The board would also like to announce its 2026 Executive Committee: Lisette Engel, President; Bill Palmer, Vice President; Scott Ottenheimer, Treasurer, and Brendan LeMieux, Secretary. We’re grateful to have this dedicated team to help lead the board!
Finally, we’d like to express our deep gratitude to outgoing members Danielle Shockey, Meredith Greene, Rebekah Pagis, and Clancey Hopper for their dedication and service to our organization.
If you’d like to be considered for a seat on the Board of Trustees in 2027, we’ll share information about that process in late summer.
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WSA Social Club
The WSA Social Club — your central hub for all virtual social and connection programs for individuals with Williams syndrome. Parents, caregivers, and siblings are always welcome to join.
All WSA Social Club activities take place virtually on Zoom. From social hangouts to wellbeing groups like Mindfulness Mondays and Wellness Wednesdays, the Social Club brings people together online in a welcoming, inclusive space. You can see what’s coming up and join events anytime by visiting the Social Club page on the WSA website.
To make connecting even easier, the Adventure Seekers Facebook page is being renamed the WSA Social Club Facebook page and will be open to adults and teens who want to connect, participate, and stay informed about upcoming virtual programs.
Bonus: Monthly hangouts no longer require pre-registration! Simply visit the Social Club page, the Events page, or the Social Club group on Facebook and join when it’s time. You can bookmark the link to join because you’ll join from the same link every month!
Important note:
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WSA Social Club: All virtual wellbeing groups, social hangouts, and future online programs for kids, teens, and adults
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Adventure Seekers: In-person travel experiences only
Join the Social Club for Adults March 12 at 4pm ET or March 17 at 7pm ET
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New Teen Social Club!
Alright teens, this one’s for you.
It’s your space. Your vibe. Your people.
Beginning in March, the Social Club will be open to teens age 13 - 17! The first hangout will be Wednesday, March 18 at 8pm ET! Parents, this is a safe, supportive space built just for teens ages 13 to 17 to connect and just be themselves.
Be sure to sign up to be added to our mailing list for all things Teen Social Club, and to get the link to join!
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FAMILY SUPPORT GROUPS
Looking to connect with other parents and caregivers?
A key part of the WSA Family Support Network is our Virtual Support Groups, where families can share experiences, ask questions, and learn from one another.
Wondering whether a support group might be for you? Check out the groups below for more details on our Family Support Groups.
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FAMILY SUPPORT GROUPS & MONTHLY EVENTS
Good news! Support groups no longer require pre-registration! Simply click the link below or the applicable Event on the Events page of the website, and join when it’s time. You can bookmark the link to join because you’ll join from the same link every month!
Tuesday, March 3 (NEW)
Wednesday, March 4
Thursday, March 5
Sunday, March 8
Monday, March 9
Tuesday, March 10
Wednesday, March 11
Thursday, March 12
Saturday, March 14
Sunday, March 15
Monday, March 16
Tuesday, March 17
Wednesday, March 18 (NEW)
Thursday, March 19
Thursday, March 26
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Convention Hotel Update
Our 2026 Convention will be held in Buffalo, New York July 7 - 11, 2026. Registration will open in late March, and our hotel room block opened at the beginning of January.
Despite having 100 more rooms than we’ve reserved in the past, the block filled up quickly! But don’t worry - we’ll be sharing news soon of more available rooms, to ensure everyone who wants to join us can. If you’re on the waitlist, we’ll reach out before making the blocks public. Quick tip - we’ve heard of people having success booking rooms at our current hotels, as people have cancelled their extra rooms or switched hotels. So you may want to check those out from time to time!
Thank you for your patience—we can’t wait to kick off an unforgettable convention in Buffalo!
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Sponsorship Opportunities Available
Interested in how you (or someone you know) can make a meaningful impact for our convention? Support our event by becoming one of our convention sponsors. This 4-day key event costs more than $750,000 to execute and utilizes an army of 150+ volunteers per day! Our goal for 2026 is to raise $250,000 in Sponsorships to assist in offsetting expenses so we can ensure the convention is as financially accessible as possible for the 1,500+ attendees. Your support will not only help us put on the event, but also contribute to the well-being and education of individuals with Williams syndrome and their families.
Please click below to view our 2026 WSA Convention Sponsorship Deck and learn how you can be a part of this incredible experience.
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Become an Exhibitor!
Convention is the perfect place to promote books, software, classroom aids, educational opportunities, products, services, or businesses that are relevant to our community. Since our attendees are primarily parents and educators of individuals with WS, hands-on practical tools and excellent educational and assisted living opportunities are of particular interest. Individuals with Williams syndrome are also welcome to share their businesses, and exhibitor fees are waived for them! Visit the Exhibitor Information page for more details or to sign up to be an exhibitor.
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Camp WSA 2026 applications are open!
Summer camp registration is in full swing! Applications to be a camper or request a scholarship are ready and waiting for you!
To learn more about Camp WSA, visit the WSA Camp page on our website.
Click below to register for camp or apply for a scholarship!
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Camp WSA 2026 Staff Needed!
The Williams Syndrome Association is currently accepting applications to work at our WSA Camp at Camp Twin Lakes West in Rutledge, Georgia. If you are interested in joining our camp team, please apply here or click below!
| | The WSA is excited to provide our members with the opportunity to participate in important research studies. Please check out the research opportunities below. | |
Research opportunities
Opportunity 1: Does your child get overly upset in any of these situations:
Brushing hair, using hand dryers, flushing toilets, or hearing loud noises? Are there other specific, predictable triggers? If so, we are looking for your help in developing a new play-based approach to reducing these strong emotional reactions: Development of Behavioral Play Therapy for Anxiety for Children with Williams Syndrome
Opportunity 2: Massachusetts General Hospital and the Lurie Center for Autism are currently recruiting for a research study on Aging in Williams Syndrome: Aging in Williams Syndrome
Opportunity 3: CReWS (the Collaborative Registry for Williams Syndrome) has been developed for, and is owned by, the Williams Syndrome Association. The Registry collects data about the lives of people diagnosed with Williams syndrome (WS) in order to advance our understanding of the condition and its underlying causes and to develop better treatment options for persons with Williams syndrome: CREWS Registry for Williams Syndrome
Opportunity 4: We invite you to take part in a research study led by Caroline G. Richter, Ph.D., at the University of Alabama at Birmingham (UAB). This study explores how children and young adults with Williams syndrome, ages 6 to 21, approach moderately challenging tasks and how their motivation relates to academic achievement, language, cognition, and behavior. Motivation in 6-21 year olds with Williams syndrome: Motivation in 6-21 "year olds" with Williams Syndrome
Opportunity 5: A new research opportunity is available from Dr. Robyn Thom at Massachusetts General Hospital and the Lurie Center for Autism. The research team can be reached at luriecenterresearch@mgb.org or by calling 781-860-1711.
The Lurie Center for Autism is recruiting for a study to find biomarkers of anxiety in people with Williams syndrome. One in-person visit to their clinic in Lexington, MA is required.: Can Wearable Devices Detect Anxiety
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Shop WSA Merch on Outshine
Looking for a special gift that gives back? Check out our custom collection with Outshine Labels, the online marketplace for disability advocates, where you can get boutique apparel and gifts for anyone on your list, and 70% of profits benefit the WSA.
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