New York, Dec. 01, 2025 (GLOBE NEWSWIRE) — The Muscular Dystrophy Association (MDA) today announced the launch of The Helen Paves Fund for Care and a Cure, an endowed fund created in collaboration with beauty expert and philanthropist Ken Paves in memory of his mother. Helen Paves died in May 2022 after a valiant fight with amyotrophic lateral sclerosis (ALS). The Helen Paves Fund will support global research and care through MDA’s network of specialized ALS care centers nationwide, now to be known as the Helen Paves MDA ALS Care Center Network. Fundraising begins today, learn more at MDA.org/Helen-Paves. Donations may be made here.
One third of MDA’s national network of care centers specialize in ALS care. These centers will receive funding from The Helen Paves Fund for Care and a Cure to bring a gold standard of care and treatment to patients, while offering compassionate support for families and caregivers.
“My mother fought ALS with her trademark tenacity and grace, but as her disease progressed, she became less focused on her personal battle and more deeply invested in winning the war on ALS through innovations in research, specialized care and the comfort of community,” said Paves.
For more than 30 years, Ken Paves has been one of the most celebrated beauty consultants and hairstylists in the world. Dubbed “the big Kahuna of Hollywood hair” by Oprah Winfrey, his artistry has graced countless magazine covers and television programs on famous heads from stage, screen and music. Beyond his acclaimed career, Paves is recognized for his philanthropy supporting children’s health, women’s empowerment, and rare disease research.
“Ken’s decision to honor his mother through this fund continues a tradition that has shaped the Muscular Dystrophy Association since the 1950s, when Eleanor Gehrig pushed this organization to fight ALS with urgency and humanity,” said Sharon Hesterlee, PhD, President and CEO of MDA. “Helen Paves’ story now powers that legacy into perpetuity. This gift strengthens the future of ALS care, accelerates research, and brings more families into a community that refuses to lose momentum.”
Across the country, MDA supports more than 120,000 visits to its MDA Care Center Network, connecting families to expert clinicians, clinical trials, and resources for people living with neuromuscular diseases including ALS. For more than 75 years, MDA has pioneered the fight against ALS, investing more than $178 million in ALS research in addition to care support and resources. Learn more about MDA’s research in ALS here.
“This gift lifts the entire ALS community,” said Ruth Ann Dailey, Chief Development Officer of MDA. “It supports care teams, advances research, and gives families a stronger path forward. Ken transformed love for his mother into lasting impact, and we are grateful to partner with him to move this work ahead.”
“The Helen Paves Fund for Care and a Cure grew out of a love so powerful it now strengthens MDA Care Centers across the country and fuels the science that moves ALS research forward,” said Morgan Roth, Chief Marketing Officer of MDA. “Helen inspired it. Ken delivered it. ALS families will feel its impact for generations, and we could not be more grateful.”
VIDEO: Watch the Ken and Helen Paves story here.
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About Muscular Dystrophy Association
Muscular Dystrophy Association (MDA) is the #1 voluntary health organization in the United States for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions. For 75 years, MDA has led the way in accelerating research, advancing care, and advocating support and inclusion of families living with neuromuscular disease. MDA’s mission is to empower the people we serve to live longer, more independent lives. To learn more visit mda.org and follow MDA on Instagram, Facebook, X, Threads, Bluesky, TikTok, LinkedIn, and YouTube.
About Muscular Dystrophy Association’s 75th Anniversary
In 2025, the Muscular Dystrophy Association proudly marks 75 years of legacy, impact, and momentum in the fight against neuromuscular diseases. Since our founding, MDA has been at the forefront of research breakthroughs, providing access to comprehensive care, and championing the rights of people living with muscular dystrophy, ALS, and over 300 other neuromuscular diseases. This milestone has been made possible by generations of dedicated support from people living with neuromuscular disease, their families, researchers, clinicians, volunteers, and donors—who boldly drive our mission forward. As we look ahead, we remain committed to honoring this legacy, building upon the impact we’ve made together, and continuing our momentum toward transformative progress for people living with neuromuscular disorders. Learn more at MDA75.org.
- In Honor of His Mother Helen, Beauty Expert Ken Paves Partners with the Muscular Dystrophy Association to Raise $5 Million for ALS Fund