Power Publicist Nanci Ryder Reveals ALS Diagnosis: "I Have No Interest in Dying"
In August, as the world rallied around the ALS Ice Bucket Challenge, the veteran publicist quietly was diagnosed with the terminal illness. Now she reveals her diagnosis, the news that she has stepped down from BWR and how longtime clients (and close friends) Renee Zellweger and Reese Witherspoon are rallying around her new mission to find a cure: "I'm grateful. It could be worse. I've had a great life."
This story first appeared in the Oct. 24 issue of The Hollywood Reporter magazine.
Nanci Ryder holds up her right hand, shaking it to show off a raised index finger, signaling the number of times she's been interviewed. This will be a first. A veteran talent publicist and co-founder of bicoastal BWR Public Relations, Ryder has, during her 30-year-plus career, facilitated thousands of interviews on behalf of her A-list clients, who have included Renee Zellweger, Leonardo DiCaprio and Reese Witherspoon. She has fielded countless questions about their lives but, until now, none about her own.
Sitting in the dining room of her immaculate, eclectic 2,000-square-foot Los Angeles home on a hill overlooking the Universal City side of the San Fernando Valley, Ryder, 62, cautiously readies herself to make her reveal. In early August, after seven months of doctors' visits across three states, which were precipitated by perplexing and ongoing vocal issues that started in January — first hoarseness, followed by uncontrollable slurring and slowed speech — Ryder received a diagnosis: bulbar onset motor neuron disease, or amyotrophic lateral sclerosis, better known as ALS and Lou Gehrig's disease, a progressive neurological illness that is always fatal. As a result, she elected to step down in August from BWR, which she launched with partners Paul Baker and Larry Winokur in 1987.
During the next 75 minutes, Ryder is the interviewee, and the subject is her heartbreaking diagnosis. But she knows her way through it, facing it head-on with the passion of an activist (which she has brought for years to such causes and organizations as Humane Animal Rescue Team and Revlon/UCLA Breast Center) and the dry humor of a comedian, one of her trademarks. While she looks impeccable and vibrant, her speech is noticeably slow — though confident — and the tears that come are chased with contagious, unexpected laughter.
Ryder with onetime client DiCaprio in 1994.
"Unless they find a cure, it's terminal," she says calmly while seated across from her interview companion today, her 20-year client and close friend Renee Zellweger. "They haven't told me that I'm terminal, but the disease is. Eventually. Look, there is Stephen Hawking, and I hear stories about people who have had it for 10 years. You don't know. But if you look it up on the Internet, it says 'progressive and terminal.' So you fight. That's it."
Ryder is readying for battle, even if her foe is slippery at best. ALS is a neurological disease that causes nerve cells to gradually break down and die. Eventually all muscles are affected, leading to full paralysis while the mind still is active. Around-the-clock care becomes necessary, with medical bills mounting to an average of $200,000 a year. Most patients die from respiratory failure after lungs cease to function.
No procedure exists to test specifically for ALS, making detection a cumulative process. There's only one drug, Riluzole, that has proved effective in slowing the disease's progression and dampening symptoms for the 30,000 who have ALS at any given time in the U.S. (with 5,600 new cases a year), according to the ALS Association. The life expectancy averages two to five years following diagnosis, though more than half of ALS patients live longer than three years. About 90 percent of cases are dubbed "sporadic," meaning not linked to genetic factors.
The eight months it took Ryder to find out what was causing her speech problems — a devastating issue for a publicist whose value and currency ride on her skill with communication — is four months fewer than the average because she's "relentless," she says. "The neurologists told me to wait. … That didn't work for me." Still, her medical footprints started in February and continued for months with exploratory trips to ear, nose and throat specialists, the dentist, a speech pathologist, gastroenterologists and neurologists, plus "a tremendous amount of bloodwork" and MRIs.
"It never occurred to me that it was a big problem," she says. "I thought it would go away." She credits UCLA's Dr. Gerald Berke with being the first to suggest ALS, though she also traveled to the Mayo Clinic in Rochester, Minn., before receiving an official diagnosis in Boston from leading ALS physician Merit Cudkowicz, chief of neurology at Massachusetts General Hospital, who is treating her along with Dr. Robert Baloh, director of neuromuscular medicine at Cedars-Sinai. Regarding a cure, Cudkowicz explains that it could be "far away. There's not going to be one drug that will solve this complicated illness. It will be a cocktail."
Although Ryder (right) no longer is Zellweger’s publicist, “I’m still bossy about what she wears and where she goes,” she says. Laughs Zellweger, “She doesn’t always win.”
Ryder says the only thing that is certain is that she will continue to make periodic visits to Cudkowicz. "There are no two cases that are the same. Will it go to my arms and legs next? They don't know. It could stay here," she says, wrapping her hand around her neck. But for now, Ryder notes that she doesn't experience pain and leads an active life. Her only complaint has been an unsettling symptom of alternating fits of crying and laughing that can last for 15 minutes. With that now under control, her emotions are the challenge: "It's been hard for me to adjust. One day at a time. I'm happy today that I can walk and hike and drive."
The matter-of-fact declaration is indicative of Ryder's no-nonsense reputation. A native New Yorker, she moved to L.A. in 1979 and landed a job as a talent agent at David Shapira & Associates, where she spent three years before segueing to publicity. Stints at Goldberg-Ehrlich Public Relations and Michael Levine Public Relations followed, then she formed Nanci Ryder Public Relations in 1984. Michael J. Fox was her first client, and her company grew quickly to cover a roster of rising talent that included Robert Downey Jr., Sarah Jessica Parker, DiCaprio, Helen Hunt, Woody Harrelson, Paul Reiser, Paul Rodriguez and soap star Don Diamont.
Ryder became a power publicist before the term was part of the Hollywood lexicon. Self-made and stylish with signature long, brunette locks, she's known to be fiercely protective of her clients. While the single Ryder (she married at 19 and later divorced) never had any children, those close to her praise a nurturing, sometimes maternal side. She has fostered longtime friendships with such onetime clients as Fox, Zellweger, Witherspoon, Courteney Cox and Viggo Mortensen. She guided Zellweger and Witherspoon to Academy Award wins — certainly career highlights for her, though she won't take any credit because she still seems most comfortable behind the scenes. Asked to expand upon her career, Ryder will comment only on her status. "Icon," she laughs. There's that humor.
Ryder married her mothering qualities with management at the helm of BWR to mentor younger talent reps like Nicole Perna, who now will run the talent department with New York counterpart Melissa Raubvogel. Leaving the company has not been easy. Ryder's last day in BWR's Beverly Hills headquarters on Wilshire Boulevard was in August.
"I was the least likely to succeed," says Ryder, who admits she has no family to speak of following the death of her mother three years ago at age 93. "I didn't go to college. I got married at 19. I moved out here and had no job, but I found this and loved it. And when you find the right thing, it's amazing. It becomes an addiction."
When asked about what she'll miss most about her work, she replies, "Everything." The word comes from the mouth of a woman who loves to talk but instead now could raise two fingers to count the number of life-altering diagnoses she has received. In 2000, Ryder was sidelined with breast cancer. She beat it in one year and went into remission with the help of UCLA's Dr. Dennis Slamon (who developed the revolutionary breast cancer drug Herceptin), but not before losing her hair and transforming into an activist to raise awareness and funds. "Cancer was a breeze," says Ryder emphatically. "A breeze! 'You have this disease. This is the treatment. Bye.' "
"They gave her marching orders, and she marched," notes Zellweger, who has accompanied Ryder to fundraisers like the Stand Up to Cancer benefit, with which BWR has been involved since the event's inception. The actress confirms Ryder's story that her experience with cancer and ALS are night and day because of the latter's "unique cruelties."
Ryder was flanked by fellow BWR founding partners Larry Winokur (left) and Paul Baker at a Stand Up to Cancer event in September that she says she attended to say goodbye to the photographers with whom she has worked over the years: “I like them very much.”
"With breast cancer, she looked at the bigger picture to see how her specific expertise could be applied to benefit other people, and that's what she's doing now," says Zellweger, who will go with Ryder to Clearwater Beach, Fla., later in October to attend the Northeast Amyotrophic Lateral Sclerosis Consortium Meeting because, as she says, Ryder is a problem-solver ever in search of information. "It's still really new, and we are watching her find her way," says the actress. "And as ever, it's with grace. And with humor, always."
No one would fault Ryder for wanting to raise a middle finger to protest the incursion of yet another deadly diagnosis, but as Zellweger says, it's not her style. Instead, she's full of surprises. "It was one of the best years of my life," says Ryder, referring to the year she battled breast cancer and won. "I was a warrior, and I'm a very good patient. I did everything the right way. I showed up. I didn't cry."
In lieu of tears, she tossed her wig. "My favorite story is when we were getting ready for a red-carpet event and she was frustrated thinking about how to cover up that she had cancer. She couldn't be bothered," recalls Zellweger. "The wig went flying across the hotel room, and we got in the car and went to the Fire and Ice Ball [in December 2000]."
She did the same at the Golden Globes in January 2001, ditching her wig by Hollywood wigmaker Renate and attending bald. But Zellweger details another tale about a dinner the two shared the night before our interview, this one showing off Ryder's comedic timing. "I told her she looked beautiful and that her cheeks were flushed with a great color. I asked, 'What's that about?' " recalls Zellweger. And the punch line? "Cells dying."
Laughter ricochets off the ceiling, but Ryder has "no interest in dying," she says when asked where she's finding her strength. "At all. None. I'm not telling you that it's easy to be optimistic and hopeful. It's not easy at all. But my only choice is to participate in awareness."
If there ever could be a good time to live with ALS, Ryder says it's now. She hadn't yet received her diagnosis when the Ice Bucket Challenge became a worldwide viral sensation in July. To date, more than $100 million has been raised as a result of the likes of Jeffrey Katzenberg and Witherspoon dumping ice water on their heads to prompt donations (Witherspoon dedicated her Aug. 23 dousing to "my friend Nanci" well before Ryder's public reveal), but Ryder knows it's only a start. "ALS is a disease that has not gotten its due," she says. "Like Parkinson's until [Michael J. Fox] came along. He's done an amazing job with his foundation. He will find a cure. I hope there will be other [Ice Bucket] Challenges for ALS; that's where money comes from, and from money comes opportunity for a cure."
Zellweger agrees: "I knew so little of this disease until the Ice Bucket Challenge. I don't think a lot of people know how devastating this disease can be. I don't think many people know it affects your entire person and takes over your life."
It's the weight of the last statement that has been Ryder's heaviest burden. "What's hardest about this is that I'll never be the same. I'll never sound the same," she says, knowing full recovery is off the table. It's a sobering truth that brings more tears. "I cry when I have to speak about it for the first time to people because I'm touched by the fact that anyone cares."
Although she will continue to informally advise certain clients such as Zellweger and Mortensen, Ryder says that getting people to care about ALS (and donate cash) now is her full-time job as she puts her focus on finding a cure, a mission to which she'll dedicate the rest of her life. (An exercise regimen and newfound meditation practice also will fill her free time.) She says this unprompted, which shows she's getting the hang of being on the other side of press.
"I'm a good interview," she laughs. Confirms Zellweger: "Thumbs up." And it's true. But Ryder also is a longtime publicist whose job it has been to control the story. Although she has just passed the finish line of her very first interview, it's clear she can't completely let go. "The story should be about being grateful," she finishes with a smile. "I'm grateful. It could be worse. I've had a great life."
Who's on Team Nanci?
Her Walk to Defeat ALS supporters call themselves the NBAA, or, says Zellweger, 'Nanci Beat the hell out of ALS Association.' It is a deep roster of industry colleagues, clients and friends who are rallying around Ryder following her ALS diagnosis, joining her fight to find a cure. Many of them, including Renee Zellweger and Reese Witherspoon, will step out with the longtime publicist Oct. 19 in L.A. for the Walk to Defeat ALS, an event that is serving as Ryder's unofficial coming-out party — championed by Zellweger, one of her closest friends.
Ryder says her friends are aware of the walk's significance. "It's the day she officially goes back to work with a new client, and that client is her disease," says BWR's Larry Winokur. "She will work harder for this client than for any client she's ever worked." For a woman who has spent a career speaking on behalf of others, those who know her well are returning the favor now.
"She's no bullshit. She tells it like it is. She's funny and really smart. I love people who are true to themselves. When it comes to the big stuff, that's when Nanci really kicks it in. She handled her breast cancer like nobody's business, and she's going to do the same for this."
Michael J. Fox
"I was Nanci's first client when she was working out of her apartment with a couple of boxes of files and cleaning up after her dog. Everything I've gone through, I've gone through with Nanci. When I was first dealing with my [Parkinson's] diagnosis, she was advising and taking care of me. I'm so heartbroken that she has to go through this. It's a brutal diagnosis and so hard to process. I would do anything for her as a person."
"Nanci is like my second mother. We talk every single morning on the phone. Her humor is very dry, and everybody has an impression of Nanci Ryder — my husband, me, my kids. She has an incredible attitude, a real joy for life."
Witherspoon says she did her Ice Bucket Challenge the day after Ryder asked: “The rapid acceleration is serious. It’s been the hardest thing to watch Nanci’s voice deteriorate so rapidly. If anything, Nanci is a talker. But we’ve told her, with all these actresses around, we can act all of her stories!”
"She's the first one to cry if the people close to her are being subjected to cruelty or difficulty of any kind, and she's the first to cry tears of joy when they have success or happiness. The people around her circle tightly."
CAA's Kevin Huvane
"Even in the toughest times, she can make us all laugh with that accent. She's a girl from Long Island who has never had an easy road. She's been a gigantic part of my life and my family, and I love her."
CAA's Bryan Lourd
"Nanci is beloved. Throughout her career, we have all seen her build and protect images for some of our greatest stars. Though this disease has taken aim at her vocal cords — and her perfectly beautiful, comical and wisdom-filled-though-sometimes-endless chatter — it will not silence her."
Management 360's Evelyn O'Neill
"Nanci is a brilliant and iconic publicist. She has superb instincts. She's above all a great connector. If you go on a plane with Nanci, she will become best friends with the person next to her and emerge with stock tips, free merchandise or a dinner date."
BWR's Paul Baker
"For almost three decades, since the R joined BW, we have shared our ups and downs. From day one, Nanci became my younger sister. She is one of those rare individuals who can light up a room with her charismatic personality and infectious passion for her work."
BWR's Nicole Perna
"One of the most important lessons I've learned from her is to always maintain your sense of humor, humility and humanity, regardless of the situation."
BWR's Larry Winokur
"Nanci lit a fire under us. She's dynamic. She has impeccable taste, great judgment and a great intuition about talent. That has always been her great pleasure: picking someone at a very fledgling state in their career, seeing their potential and guiding that through to fruition. She built a standard of practice for our business that is very hard to exceed."
For more information and ways to get involved in Ryder's cause, visit alsagoldenwest.org.