Nanci Ryder's Friends Mobilize as ALS Takes "Everything Except Her Spirit"

Nanci Ryder and Friends - Photographed by Brian Bowen Smith - H 2017
Photographed by Brian Bowen Smith

Three years into a cruel battle, the PR veteran's inner circle rallies to fundraise and give her strength: "Is life still a gift? The answer is always yes."

Nanci Ryder can't speak. Her voice and all motor skills have vanished due to ALS, vicious and unrelenting. But Ryder's friends, of which there are many, are always up to lend theirs — even when conversations are tough. "Thank you for spending time with us today," reads an email from Kathy Maffei (a "Team Nanci" stalwart like Renee Zellweger and Courteney Cox), sent after an hourlong visit to Ryder's Studio City home for a check-in. "Nanci would want you to write about the progression of her condition. She would want people to know everything."

Here it is: Veteran publicist Ryder, co-founder of BWR Public Relations, revealed in October 2014 that she'd been diagnosed with ALS, a progressive neurodegenerative disease that is always fatal, with a life expectancy of two to five years following diagnosis. Since then Ryder, determined to raise funds for awareness and a cure, has sat for four THR interviews, and each has showcased a heartbreaking new loss. First, her speech was slow and slurred. Year two, she could no longer speak or swallow. Then, she had trouble walking, holding objects and sending emails. Now, the 65-year-old Ryder — once vibrant, hilarious and even a bit rowdy — is confined to a wheelchair, and her only method of communication is fixing her eyes on signs that say "yes" or "no." Her mind fires normally, but her body is nearly paralyzed, one of ALS' most devastating cruelties.

Yet Ryder is still fighting: She attended October's Walk to Defeat ALS, where Team Nanci finished as the No. 1 fundraising team for the fourth straight year (they've raised more than $600,000). "It feels like hope when you're at the Walk," says Cox. Ryder will make another public appearance Dec. 2 at the ALS Association Golden West Chapter's Champions for Care and a Cure fundraiser, where THR will be honored for its coverage of her journey alongside USC stem cell researcher Justin Ichida and the Tanzman family.

Ryder draws strength from her close-knit clan, including hairstylist Tracey Cunningham, a longtime friend who still colors her hair — Ryder may not be able to speak, but she gets mani/pedis every two weeks and picks out her handbags and clothes on a daily basis, Maffei notes — and CAA partners Bryan Lourd and Kevin Huvane.

"Nanci has tackled this in such a way because she doesn't want it to happen to anyone else," explains Cunningham. "It's a deplorable, deplorable disease that robs you of everything. This is the worst thing that can happen to her; someone who was a good communicator who now can't communicate, even with her hands. It's been really tough."

Cunningham starts crying then, thinking of her newer salon staffers, some of whom have never heard Ryder's voice. "They ask me, 'What was Nanci like?' I tell them she's a fast-talking Jew from Great Neck, Long Island, who was never, ever, ever afraid to say what was on her mind."

Aside from divulging the challenges of life with ALS, what's on Maffei's mind is Ryder's circle of confidantes. (All of her friends praise Ryder's round-the-clock live-in nurses, twins Jerome and Jerald.) "Nanci has put together such a wonderful group of friends," she says. "The core 'Team Nanci' friends are so amazing. They are so passionate for her well-being. It consistently warms my heart."

It's a circle that continues to grow.

Longtime friend Lourd remembered that Ryder had expressed reverence for Judaism some time ago, even mentioning one Rabbi whom she respected. Lourd tracked him down and asked that he meet with Ryder, who had previously told THR that she never sparked to a spiritual life. Ever since, the Jewish chaplain, Stephen Macht (also an actor), has been going to her home for regular meetings.

"Whatever you believe in and whoever you believe in," says Lourd, "what became clear is that her friends and she were all facing the bigger questions about why we are here and why we belong." Those are difficult questions for anyone, let alone a woman facing her second life-threatening illness (Ryder beat breast cancer in 2001). "She can't communicate with words or gestures, but with her eyes she can so it's incredibly reassuring that she see these faces and the love she's got around her," Lourd continues. "Every time I see her, I inevitably ask her this question: 'Is life still a gift?' The answer is always yes. It doesn't stop. It surprises me every single time because what she is faced with is so complicated. This disease has taken away everything that she had except her spirit."

A version of this story first appeared in the Nov. 29 issue of The Hollywood Reporter magazine. To receive the magazine, click here to subscribe.