A Message from Executive Director, Sarah Schaefer
Happy New Year everyone!
There’s so much excitement in store for the WSA and our community in 2026! Here’s a little bit about what we have ahead!
CONVENTION 2026: As most of you know, our 2026 Convention will be held in Buffalo, New York July 7 - 11, 2026. Registration will open in 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. We also opened up the application process for scholarships last week. That application will remain open until April 30, 2026. More information about the opportunity to be a sponsor, exhibitor, or volunteer will be on our website soon as well!
WSA KNOWLEDGE NETWORK: The vision of the WSA is to ensure that all individuals with Williams syndrome have the support they need throughout their lifespan to live healthy, self-directed, productive, and meaningful lives. To achieve this vision, individuals with Williams syndrome must participate be meaningfully included in educational, work, and community settings. For years, the WSA has provided been providing educational support for years, but we’ve recognized the need to expand and formalize that support. In February, we’ll launch the Knowledge Network - our team of expert consultants formed to support families in Education, IEP/Transitions, OT/PT/SLP/Behavior, Individual & Couples Therapeutic consultation and Adult Services - all areas that are critical to the success of individuals with Williams syndrome. Dr. Robin Pegg will be helping to lead this dedicated group of professionals, whose services will be available at no charge to WSA members! We’re thrilled to be able to offer this support to families throughout the country, and are grateful for contributions from individual donors and other charitable organizations that will make this network possible. Over the next few weeks, watch for the formal announcement, which will contain details about who our consultants are and how to request support!
ENHANCING SUPPORT: We’re thrilled to announce we’ve welcomed Paola Martínez Vélez to the WSA team as our Development Manager. Paola was born in Puerto Rico and moved to Miami in high school, where she later earned a degree in Psychology with a minor in Portuguese. Her academic background reflects a lifelong passion for people, connection, and cross-cultural understanding. Paola’s greatest education, however, came through her son, Enrique, whose diagnosis of Williams syndrome introduced her to the world of therapies, research, advocacy, and early intervention. Through this journey, she developed a deep, firsthand understanding of the power of access to care and strong support networks. Inspired by what research, community, and shared knowledge have made possible for her own family, Paola became a dedicated advocate and fundraiser for the Williams Syndrome Association. Her work is driven by gratitude and a belief that when families are informed and supported, lives are truly changed. Paola will play a key role in the success of our signature event, Walk for Williams, which takes place in more than 30 communities across the country. She will also lead the annual fund, manage all event fundraisers, and assist Jon Kent with major gifts and donor stewardship.
And these things are just a few of the exciting things ahead of us! I’ll share more about the other ways we’ll be expanding our support of each of our families over the next few months. None of this would be possible without your ongoing support - and I’m grateful beyond words for that support. It’s a privilege to serve this wonderful community, and look forward to everything we have in store for 2026!
With deep appreciation,
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Sarah Schaefer
Executive Director
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Together, a 60% Increase in the Annual Fund Holiday Appeal
The 2025 Annual Holiday Appeal is now history, and it was a smashing success. Thanks to the extraordinary generosity of our community, the appeal soared past its goal of $200,000 (last year’s total) and raised an impressive $320,000 in support of individuals and families affected by Williams syndrome.
More than a fundraising milestone, this year’s appeal reflected the strength of a community that continues to draw closer together. Gifts from longtime supporters, first-time donors, families, friends, and advocates made this year’s Annual Appeal a truly shared effort.
Because of your support, WSA can increase our investment in programs, research, and new opportunities that bring people together and strengthen the Williams syndrome community. We are grateful to all of our donors for your partnership and for the momentum you’ve made possible.
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WSA Social Club
Introducing 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 February 17 at 4pm ET or February 19 at 7pm ET
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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 video 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, February 3
Wednesday, February 4
Thursday, February 5
Sunday, February 8
Monday, February 9
Tuesday, February 10
Wednesday, February 11
Sunday, February 15
Tuesday, February 17
Thursday, February 19
Thursday, February 26
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Convention Hotel Update
2026 Convention will be held in Buffalo, New York July 7 - 11, 2026. Registration will open in 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.
Thank you for your patience—we can’t wait to kick off an unforgettable convention in Buffalo!
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Camp WSA 2026 Registration & Scholarships are open!
Camp WSA 2026 is Back at Camp Twin Lakes West!
📍 Rutledge, GA
📅 May 24–29, 2026
🏕️ For ages 6-20
Camp WSA is returning to Camp Twin Lakes West in Rutledge, Georgia—the same site we used in 2023 and 2024 for both Kids Camp and Teen Camp.
Many campers, families, and staff already know this location, which helps make arrival, transitions, and daily routines smoother and less stressful. The familiar cabins, activity spaces, and dining hall allow returning campers to settle in quickly and feel confident from day one. Campers who joined us for the first time last year will now share a common experience with many of their friends who have attended before.
This site also supports stronger staffing, smoother schedules, and a camp setup our team knows well, which means families can expect the same warm, supportive community—with the added comfort of a location that has already proven to work beautifully for Camp WSA.
To learn more about Camp WSA and available scholarship opportunities, visit the WSA Camp page on our website.
Click below to register for camp or apply for a scholarship!
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Talking About Sexuality: A Temple University hosted workshop for Parents of Youth and Adults with Intellectual and Developmental Disabilities
In honor of Valentine’s Day, join Temple University for a free virtual workshop on Zoom for parents, guardians, caregivers, and family members.
Talking about sexuality with loved ones with disabilities can feel challenging. Many families worry about safety, relationships, and how to start these important conversations. This workshop will help you feel more confident, informed, and prepared to talk about sexual health and relationships in a supportive and respectful way.
Topics include:
* What Is Sexual Health?
* Barriers to Communication
* Human Sexual Development
* Tips for Talking
Registration is required.
The same session will be offered on two dates:
Wednesday, February 11, 2026 from 6 pm to 8 pm Eastern Time Monday, May 11, 2026 from 6 pm to 8 pm Eastern Time
Click below to register and learn more.
Sponsored by Temple University Institute on Disabilities
| | 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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