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