> At a Glance
> – Celebrity hairstylist Ken Paves pledges $5 million to expand ALS care centers
> – His mother Helen died from ALS complications in 2022
> – Funds support the Helen Paves Fund for Care and a Cure with the Muscular Dystrophy Association
> – Why it matters: The initiative aims to reduce the isolation and financial burden faced by ALS patients and caregivers
Three years after losing his mother to ALS, Ken Paves is turning grief into action with a $5 million commitment to transform how families navigate the disease. The celebrity hairstylist-known for styling Jessica Simpson and Oprah Winfrey-says the struggle to find help after his mom’s 2022 diagnosis felt like “drowning.”
The Caregiving Crisis
Paves spent 2.5 years as a full-time caregiver, shuttling Helen between Mayo Clinic, Cedars-Sinai, and Stanford in search of answers. Despite his resources, he still felt lost.
> “I didn’t know which way was up,” he tells News Of Los Angeles. “I was at the most desperate I’ve ever been in my life.”
The Muscular Dystrophy Association became his lifeline, connecting the family to one of their 150 care centers nationwide.
A New Fund for Families
Paves and MDA are now expanding that safety net. The Helen Paves Fund for Care and a Cure will:
- Open additional ALS care centers
- Underwrite research toward a cure
- Cover care costs that bankroll many families
> “I can’t imagine what it’s like for people who don’t have the kind of access I did,” he says. “Funding care centers is just as important as finding therapy and a cure.”
Remembering Helen
Helen Paves went from coaching her son’s T-ball team and traveling to Oprah tapings to losing her ability to speak. Ken still chokes up recalling the moment doctors urged him to record her voice before it vanished forever.
> “My mom used to work with me in my hair salon… All my friends knew and loved her.”
One month into fundraising, Paves is nearing the $5 million goal through auctions and events. He calls the effort “the most important thing” he’ll ever do, insisting ALS patients deserve dignity and visibility.
> “We don’t want people to turn their eyes away from somebody who looks like my mom did in her wheelchair.”
Key Takeaways
- Ken Paves’ $5 million pledge targets ALS care gaps
- The fund honors his mother Helen, who died in 2022
- MDA will use the money to open more care centers and finance research
Paves hopes the initiative spares future families the isolation he felt and gives patients like Helen the grace they deserve.
