Celebrity hairstylist Ken Paves is honoring his late mother, Helen, who passed away from ALS in 2022, by turning his grief into action. Caring for a loved one with ALS, Paves explains, was a daunting and emotional journey, filled with uncertainty and costly treatments. He describes the experience as “a club you never want to be in,” sharing how he traveled to top medical centers seeking answers, often feeling lost and overwhelmed.
Through his search for support, Paves found a lifeline in the Muscular Dystrophy Association (MDA). The organization’s network of care centers provided him guidance, hope, and practical assistance during his mother’s illness. For Paves, these centers were not just medical facilities—they were a safe space where he could ask questions, receive answers, and feel supported during one of the most challenging periods of his life.
Determined to give back, Paves recently launched the Helen Paves Fund for Care and a Cure, committing $5 million to expand ALS care and accelerate research through the MDA. His goal is to make quality care accessible for families facing the disease, highlighting the need for dignity, visibility, and support for patients struggling with ALS. Paves emphasizes that care centers are just as important as research, particularly for families who may lack the resources he had.
Even years after Helen’s passing, Paves reflects on her strength, love, and resilience, remembering how she supported him throughout his career. From traveling with him to TV appearances to being his constant companion, her spirit continues to inspire his advocacy. For Paves, this mission is deeply personal—he wants every ALS patient and their loved ones to feel seen, supported, and hopeful, just as he did when he first found the MDA.