Ken’s mom Helen in her mid/late teens in Detroit. Photo: Courtesy of Ken Pavés
Celebrity hairstylist Ken Pavés turns personal grief into global advocacy through the Helen Pavés Fund, honoring his mother’s ALS journey and reshaping the future of care.
Ken Pavés has spent his career shaping the profiles of celebrities, such as Jennifer Lopez, Céline Dion, Victoria Beckham, and many more. But the truest portrait he has ever crafted is one the world rarely saw: one of his mother Helen, who was diagnosed with Amyotrophic Lateral Sclerosis (ALS). What began as a journey of care, grief, and unrelenting love has now become a global call to action through the newly established Helen Pavés Fund for Care and a Cure, in partnership with the Muscular Dystrophy Association (MDA).
Pavés’ understanding of ALS traces back generations. His grandfather, who migrated from the Philippines, and his uncle both passed away paralyzed, long before ALS had a name, a test, or a clear medical vocabulary. When Helen began showing similar symptoms decades later, the family entered years of uncertainty, tracing clinics across the United States, seeking explanations that did not yet exist. “Before we had a diagnosis, I still had hope,” Pavés recalls. “But when [it became clear] it was ALS, it became a lot scarier because there was nothing you could do.”
What he could do, he decided, was to preserve her dignity. Even as her muscles weakened and the world narrowed to beds, wheelchairs, and breathing tubes, Pavés continued to live fully beside her: dressing her carefully, taking her to the beach, and later, driving her through Michigan in her old car to see a movie or get a sip of soda from a drive-through. “I want people to learn to live with ALS rather than die from it,” he says. “My mother lived until her last moment.”
That commitment became a crash course in the gaps of ALS care: specialized knowledge that many healthcare providers lacked, costly equipment rarely covered by insurance, and the emotional and financial weight placed on families navigating the disease alone. At one point, a friend who was a hospice charge nurse coached Pavés through healing a stage four wound on his mother’s back, a wound that could have killed her. “So many families won’t ever be given that information,” he adds. “I want to change that.”
The turning point came when two women working in ALS connected Pavés to the Muscular Dystrophy Association. Suddenly, he says, “We weren’t alone anymore.” Through genetic testing facilitated by the National Institutes of Health (NIH), Helen’s DNA helped identify and confirm the ANXA11 mutation, making her one of the key figures in establishing the first genetic code for a specific form of ALS. It was a breakthrough that will guide future research: a remarkable contribution from a woman who, at the time of testing, could communicate only by closing her eyes.
In many ways, that unseeming gesture became the language of her final years. It is now at the heart of the children’s book Pavés wrote in her honor, launching next spring alongside the fund. Illustrated with subtle nods to their Filipino heritage, the book reframes Helen not as a patient but as a heroine who ignites wonder in the eyes of children. “Through my goddaughter’s eyes, there was nothing wrong with my mom,” he says. “She just slept in her playroom.” All proceeds from the book will go to the fund.
Set to raise USD 5 million, the Helen Pavés Fund will support ALS research globally, expand access to clinical trials, and provide aid to families. In a landmark tribute, around 50 ALS-focused care centers across the United States will be renamed the Helen Pavés Center for Care. Pavés will further spearhead the fundraising through celebrity auctions, beauty industry partnerships, and cross-cultural outreach, including future medical missions in Zambales, where his family is from.
“This will be the most important thing I’ve ever done in my life,” he says with tears in his eyes. “I couldn’t do everything for her while she was alive. So I’m damn sure I will do everything now.”
When asked how he would like Helen to be remembered, Pavés describes a woman who refused pity, who faced each procedure with courage, who continued to fight even when words left her and only the emotion in her eyes remained. “She was small but mighty,” he says. “I don’t want her to be defined by dying of ALS. I want her to be defined by living through it.
“I hope to build a legacy of compassion,” he continues. “One that keeps her alive, and helps others live with dignity too.”
For more information on the Helen Pavés Fund for Care and a Cure, visit MDA’s official website.
