Celebrity Hairstylist Ken Paves Talks About His Late Mom’s ALS (Exclusive)

Celebrity hairstylist Ken Paves is still mourning the death of his mother Helen, who died from ALS complications in 2022. He’s also opening up about the struggle of caring for a loved one with the disease, especially when there are so many unknowns — and high costs.

“You feel like you’re drowning,” he tells PEOPLE of the experience.

“It’s a club you never want to be in. And you never want somebody you love to be in. But my mother meant more to me than anything in the world, and it was my job to help her and protect her after her diagnosis. But I just didn’t know where to go. I didn’t know which way was up. I took her everywhere for answers — the Mayo Clinic, Cedars, Stanford. And it still felt like I was just running in circles.”

Paves, who has worked with everyone from Jessica Simpson to Oprah Winfrey, says that he eventually found a trusted resource in the Muscular Dystrophy Association. The organization supported him, as well as thousands of other people, through 150 care centers around the country.

“I was at the most desperate I’ve ever been in my life, and they were a beacon of hope for me,” he says. “They were a destination where I felt safe to ask any question, and they had actual answers.”

Now he’s giving back to the foundation that saw him through his toughest times.

In early December, Paves announced the Helen Paves Fund for Care and a Cure, and a $5 million commitment that he’s raising with the Muscular Dystrophy Association to expand ALS care and accelerate research, all in memory of his mother. “There isn’t a cure, but organizations like MDA help with the desperation, to know you’re not alone.”

Paves is also eager to see more care centers available to the public, considering the crippling cost of care.

“I struggled,” he says, noting that he couldn’t work for two and a half years because he was Helen’s full-time caregiver. “I’m a person with resources and who knows people, and I can’t even imagine what it’s like for people who don’t have the kind of access I did. Which is why I think funding care centers are just as important as finding therapy and a cure.”

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Three years after his mom’s death, Paves still tears up at the memory of her vivaciousness, her love for her family, and her eventual fate.

“My mom used to work with me in my hair salon, and she traveled with me for work. I did the Oprah show for 12 years, and my mom went to every show with me. She was my model at QVC. All my friends knew and loved her.”

He continues, “She was so incredibly strong. She raised three boys. She worked at a factory. She cleaned houses. She coached my T-ball team. But her disease got to the point where she couldn’t speak, and when someone tells you to record you mother’s voice because you might not ever hear it again, that was just so hard. I knew how much she wanted to be able to say ‘I love you’ again.”

One month after launching the fundraiser, Paves is on his way to meeting the $5 million goal for MDA and the care center expansions, with more auctions and fundraising efforts in the works.

“This will be the most important thing that I do in my entire life,” he says. “And I’m beyond committed to it. But I also want people to understand that people with ALS, they need dignity. I don’t want people to turn their eyes away from somebody who looks like my mom did in her wheelchair in a restaurant. We want them to be seen, to be given the grace they deserve.”