A transformative force for the FSHD Society
by June Kinoshita, FSHD Society
Judy Seslowe, whose life was marked by compassion, leadership, and unwavering commitment, passed away on April 13, 2025 at 82 years of age. She leaves behind a legacy that has profoundly shaped the FSHD Society and the broader community affected by facioscapulohumeral muscular dystrophy (FSHD).
Judy joined the FSHD Society’s Board of Directors in 2009. She was a passionate advocate and peer resource for individuals and families navigating the challenges of FSHD. Her optimism and vision for a future with effective treatments fueled her tireless efforts to advance research and support. Judy’s impact was especially felt through her exceptional fundraising abilities—she raised significant funds both personally and as the driving force behind benefit events.
Her first event was a simple backyard picnic. She teamed up with Beth Johnston, now the Society’s Chief of Community Engagement but at that time a volunteer. Over the years, the picnic evolved into the Festive Evening of Song, a dinner and concert featuring pianist Steven Blier, a celebrated musician who was fighting his own battles with FSHD.
For several years, Judy’s family, social circle and the FSHD community in the New York City region would throng to the New York Botanical Gardens on a fall evening to enjoy one another’s company and thrill to performances by Blier and his friends – legendary singers like Kelly O’Hara, Sylvia McNair and Judy Kaye. The live events evolved into a clever “stay-at-home concert” in which invitees were encouraged to listen to music while sipping their favorite libation dressed in pajamas, relaxing in a favorite chair and making a generous donation. All told, Judy’s efforts raised more than $3 million for the Society.
Warm and generous, Judy was a connector, bringing together patients, families, clinicians, and researchers, fostering a sense of unity and hope within the FSHD community. She believed deeply in the power of collective action and philanthropy, understanding that every gift and every act of support brought the Society closer to its mission of finding treatments and, ultimately, a cure.
In this video, Judy and Beth Johnston share what they have learned from organizing benefit events: A fundraising masterclass with Judy Seslowe and Beth Johnston.
Judy was a devoted wife, mother, grandmother, great-grandmother, sister and friend. She is survived by her loving husband Ken, children Emily and Alan Rosenfeld, Jonathan and Jamie Seslowe, grandchildren Aerin, Allan, Chloe, Nate and Sydney, great-grand- daughter Sadie. The funeral service was held on Wednesday, April 16th, 2025 at 11:00am at John J. Fox Funeral Home in Larchmont, NY.
Judy’s legacy is one of resilience, kindness, and transformative leadership. She inspired others not only through her advocacy and resourcefulness but also through her personal example of living fully —enjoying her family, cultivating beauty in her gardens, and embracing the arts and travel. Her optimism and dedication will continue to inspire all who work toward a world free from the burdens of FSHD.
The FSHD Society, and all who knew her, mourn her loss and celebrate her extraordinary life. Judy Seslowe’s spirit will remain a guiding light for the community she so deeply cherished and transformed.
The Society gratefully accepts donations in Judy Seslowe’s honor.
Leave a Reply