A Message from Executive Director, Sarah Schaefer
Hello everyone,
Just as I expected — I blinked, and it’s Halloween! October seems to have flown by in a flash, filled with a rollercoaster of highs and lows.
Our hearts are heavy here at the WSA with the loss of longtime volunteer and program leader Pam O’Halloran Blevins. Pam’s warmth, dedication, and advocacy touched countless lives across our community. Please take a moment to read about her tremendous impact on the WSA and keep her family, loved ones, and the many individuals with Williams syndrome who knew her for decades as Mama Pam in your thoughts.
Since my last note, Walks for Williams have been held in the Twin Cities, Grand Rapids, and Pittsburgh—with a few more coming up in the next few weeks! We also announced that the 2028 Convention will take place in the Twin Cities, Minnesota, from July 11–15, 2028—so be sure to mark your calendars! You’ll find important dates in the convention section of this newsletter, and I’ll be sharing more about how we select convention locations, along with additional details, in the weeks ahead.
Earlier this week, I had the privilege of representing the WSA at the National Organization for Rare Disorders (NORD) Annual Meeting and Breakthrough Summit in Washington, DC. Despite a few logistical challenges brought on by the government shutdown, NORD hosted an outstanding, information-packed event that brought together leaders and advocates across the rare disease community.
One of the most exciting events this month was the International Conference on Research in Williams Syndrome, hosted by the Armellino Center of Excellence for Williams Syndrome (ACE-WS). The program featured sessions on genetics, behavioral health, cognition and development, brain and behavior, cardiovascular disease, and more.
The two-day conference closed with a moving panel of adults with Williams syndrome who shared their health journeys and hopes for future research. We’ll be sharing that video with you soon — it’s one you won’t want to miss!
Encouraging and supporting research into a wide range of issues related to Williams syndrome is part of the mission of the WSA. Thanks to the extraordinary efforts of Camille Fortunato and her husband, Stefano – whose research fund at the WSA honors their son, Anthony Filippazzo – we were able to purchase more than $600,000 in advanced cardiovascular research equipment to support the work of Mark Levin, MD.
Dr. Levin, who recently joined the Armellino Center of Excellence for Williams Syndrome as Medical Director, is leading pioneering research into sudden death and Williams syndrome. This new equipment will help deepen his understanding of the causes and possible interventions to prevent these tragic events—advancing the urgent work of protecting and extending the lives of people with Williams syndrome.
One of the advantages of supporting research through the Williams Syndrome Association is efficiency. Unlike large academic institutions that routinely deduct 20% or more in indirect costs or overhead, virtually 100% of your gift to the WSA’s Research Program goes directly to the investigators and their work—accelerating discovery and impact with minimal administrative expense.
As we head into this special season of gratitude, love, and joy (though I’m lucky to have a son with WS who sprinkles joy around our home like confetti year-round!), I want to express my heartfelt appreciation for each and every one of you. It’s an honor and a privilege to lead this incredible organization, and I’m deeply grateful for your continued trust and partnership.
Take care,
Sarah
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Sarah Schaefer
Executive Director
| | Left to right: Jon Kent, WSA VP of Philanthropy & Communications; Brendan Lemieux, WSA Board of Trustees Secretary and Starry-Eyed Podcast host; Sarah Schaefer, WSA Executive Director; Dr. Mark Levin, Medical Director, Armellino Center of Excellence for Williams Syndrome; Camille Fortunato, Founder of The AF Grant for Williams Syndrome Research | | |
In Loving Memory of Pam O’Halloran-Blevins
The Williams Syndrome Association mourns the passing of our dear friend Pam O’Halloran Blevins, a remarkable advocate, organizer, and mother to Kelsey (WS). Pam dedicated her life to creating connections and fostering joy for our adult community, especially through her decades of work with The Dream Team.
Pam’s energy and compassion knew no bounds. Whether she was leading virtual gatherings, cheering at in-person events, or simply reaching out to make someone feel seen, Pam made sure our older adults with Williams syndrome were not only included but celebrated.
She worked tirelessly to make the world better for everyone. Her kindness, determination, and love leave a lasting mark on the WSA community and all who had the privilege of knowing her.
The following are reflections about Pam from the WSA community:
From Terry Monkaba, Retired Executive Director, WSA:
As one of the members of the WSA’s first group of Board members, Pam O’Halloran had a 40-year history with the WSA. And whether it was as a Board member, a regional director, the founder (in 1994) and leader (for 31 years) of the WSA’s adult/Dream Team program, a convention session leader for parents, or water aerobics leader for adults with WS….she handled each task with the same passion to help others learn and compassion for all who she came in contact with, that made each one of us feel lucky to be working with her, or learning from her, or laughing with her. To put it simply, Pam had that “something-special” and we were so fortunate to have Pam in our WSA family. Pam never met a stranger, and made every newcomer – whether parent, professional, or individual with WS – feel welcomed and “at home”. Our WSA “family” is far better to have had Pam in its midst and will not be the same without her.
From Jan Beard, co-leader of The Dream Team:
Another beautiful person, inside & out, gone too soon! Pam was the sweetest, kindest, most loving person. Mama Pam to so many of the WSA Dream Team & a great friend to my family! We lost her husband Randy earlier in the summer! Randy was so funny & just a comedy show to be around! They are now reunited in Heaven! I loved them both so much & am at a loss for words! Prayers please for my family, the WSA family, Pam & Randy’s family & especially for their daughter Kelsey
From Sarah Schaefer, WSA Executive Director:
Our hearts are broken at the loss of such an incredible human. Pam leaves behind a beautiful legacy of love, countless wonderful memories, and a void that can never be filled. We’re forever changed because of Pam - and her impact will never be forgotten.
We are deeply grateful for all Pam gave: her time, her heart, and her unshakable belief in the power of connection. She will be profoundly missed, and her legacy will continue to shine in every Dream Team gathering and every life she touched.
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Take Stock in Your Year-End-Giving
As the year winds down, one of the smartest—and simplest—ways to support the
Williams Syndrome Association (WSA) is to donate appreciated stock.
When you give stock that’s gone up in value, everyone benefits:
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You avoid capital gains tax you’d owe if you sold it.
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You can deduct the full market value of the stock (within IRS limits).
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WSA receives the full value to fund research, education, & family support programs.
If you still like the investment, you can even buy the equities back right away—
refreshing your cost basis while helping the WSA.
Before making your gift, please consult your own financial or tax advisor to
determine what approach makes the most sense for your personal situation.
Every Gift Counts.
Your generosity powers everything we do—from advancing research and
education to building community and creating opportunities for people with Williams
syndrome.
Questions or ready to make a stock gift?
Contact Jon Kent, Vice President for Philanthropy &
Communications here
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WSA Adventure Seekers
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!
Join us November 18 at 4pm ET or November 20 at 7pm ET
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FAMILY SUPPORT GROUPS & MONTHLY EVENTS
November 2025
Saturday, November 1
Tuesday, November 4
Wednesday, November 5
Thursday, November 6
Monday, November 10
Tuesday, November 11
Wednesday, November 12
Thursday, November 13
Saturday, November 15
Sunday, November 16
Tuesday, November 18
Thursday, November 20
Monday, November 24
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We know many of you are eager to begin planning for Convention 2026, and we are just as excited to share the details. While we’ve experienced a few hiccups with hotel construction, we are working hard behind the scenes to finalize everything you need to plan your trip.
Here’s a brief look at what’s in store:
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Wrightslaw Training – An optional pre-convention program focused on special education law and advocacy. It is designed for parents, advocates, attorneys, educators, health care providers, and others who represent the interests of children with disabilities and their families and is open to both members and non-members.
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Taste of Buffalo – The largest two-day food festival in the United States, right in the heart of downtown and steps from the convention center.
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Optional Excursion to Niagara Falls – Experience one of the natural wonders of the world with your WSA friends.
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Sessions for Everyone – Learn from parents, educators, medical professionals, and friends with Williams syndrome as they share knowledge, insights, and experiences.
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Age-Specific Programs – Engaging activities and support designed for all ages, from infants to adults, plus sibling programs for ages birth through 17.
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WSA Favorites Return – Don’t miss GLOW bingo, karaoke, and of course, our themed dance party on Saturday night.
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Save these key dates:
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November 5, 2025: – Hotel information released, room blocks open, and convention pricing posted.
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January 20, 2026: Scholarship information available and application opens.
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March 4, 2026: Registration opens for convention, sessions, and programs.
More details are on the way soon, but for now, mark your calendars, spread the word, and start getting excited for an unforgettable week together.
We can’t wait to welcome you to New York in Buffalo/Niagara, July 7 - 11, 2026!
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Convention Committee Update
Hotel information will be released on November 5.
Please note that our next Convention Committee meeting has been moved to Monday, November 3 at 8 PM ET. This change gives us a bit of extra time to finalize sponsorship and donation materials so we can make the most of our discussion.
Thank you for your flexibility and understanding!
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Explore Local and National Resources on Our Website
We’ve expanded the “Connect with Your Local Community” section of the WSA website to include a growing list of national organizations and resources available to everyone. These listings make it easy to “Search by State” and find information relevant to where you live.
You’ll now find links to organizations such as The Arc, Centers for Independent Living, HUD Public Housing Agencies, State Housing Finance Authorities, United Way, ADRC/Eldercare Locator, Habitat for Humanity, Family Voices USA Affiliates, Special Needs Alliance (Find an Attorney), Wrightslaw (Special Education Advocacy), and Olmstead Rights Information.
We’re continuing to add more state-specific resources so that when you select your state, you’ll not only see your Family Support Specialist, local volunteers, and upcoming events, but also access valuable tools and connections to support everything from adult housing options to IEP assistance.
| | 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
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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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