The Kennedy’s Disease Association is deeply saddened to share news of the passing of Dr.

William R. Kennedy, a neurologist and scientist whose work shaped the scientific and clinical understanding of Kennedy’s Disease, laid the foundation for today’s global research efforts, and transformed the lives of individuals and families affected by this disease. Nearly six decades ago, Dr. Kennedy did something extraordinary. At a time when many individuals were misdiagnosed with ALS and left without answers, he carefully observed, listened, and followed the science. His work led to the identification of what we now know as Kennedy’s Disease, giving patients and families something deeply meaningful: an accurate diagnosis and a path forward with hope. His work advanced the genetic understanding of Kennedy’s Disease, identifying the location of the gene mutation and the mutation itself. What began in one lab has grown into a global research collaboration, involving scientists in many countries to better understand the scope and impact of this disease. Dr. Kennedy was known for his humility, kindness, curiosity, and deep respect for patients. His legacy lives on through every person diagnosed, every family supported, and every step forward in research to find a cure for Kennedy’s Disease. We extend our deepest condolences to the Kennedy family and honor Dr. Kennedy by continuing the work he began. We invite you to visit our website to read the full tribute: Remembering Dr. William R. Kennedy: A Legacy That Lives On for People Affected by Kennedy’s Disease. You’ll also find a link to the obituary, and learn how you can help the KDA honor Dr. Kennedy’s legacy. https://kennedysdisease.org/about-us/news-room/kda-news.html/article/2026/01/12/remembering-dr-william-r-kennedy-a-legacy-that-lives-on-for-people-affected-by-kennedy-s-disease Thank you, Dr. Kennedy. Your impact is immeasurable, and you will always be remembered.