ALS Ice Bucket Challenge Progress
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style."
– Maya Angelou, American poet, singer, memoirist, and civil rights activist
It is difficult to define any person by a single word, especially one who is a trailblazer in their industry, a caring and loyal friend, and someone who isn’t afraid to fight for what they believe in. However, when describing Nanci Ryder, the word “remarkable” is often the one chosen.
On June 11, 2020, after a nearly seven year battle with amyotrophic lateral sclerosis (ALS), Nanci died peacefully at her home, surrounded by her family of close friends.
Born and raised in Long Island, New York, Nanci was always an independent person. In 1979, she moved to Los Angeles and found her passion working in public relations. Her first job was as a talent agent at David Shapira & Associates, and she worked there for three years before she transitioned into publicity. Nanci then worked at Goldberg-Ehrlich Public Relations and Michael Levine Public Relations before starting out on her own in 1984.
"I was the least likely to succeed," Nanci said in an interview with The Hollywood Reporter. "I didn't go to college. I got married (and later divorced) 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."
Working at first from her apartment, Nanci began her business with one client - Michael J. Fox. She soon expanded her talent roster to include Robert Downey Jr., Sarah Jessica Parker, Leonardo DiCaprio, Helen Hunt, Woody Harrelson, Paul Reiser, Paul Rodriguez, and soap star Don Diamont. She opened an office for her firm, Ryder Public Relations, and recruited another publicist, Jay Schwartz, from New York, who would become a lifelong friend.
“I remember my first day, I brought a cardboard box with me to work, and it had all my stuff in it,” said Jay Schwartz. “Something just clicked between us. We would laugh and just have a blast together. We sat on the floor next to each other and made phone calls and tried to get work done. We weren't making a lot of money, but we had fun and made the most of it. Our running joke was that if we could just sign one more client at $1,500, then all of our bills would be paid.”
In 1987, Nanci co-founded BWR Public Relations with Paul Baker and Larry Winokur. Through her grit and perseverance, she became one of the most highly sought-after publicists, working with many A-List celebrities such as Courteney Cox, Renée Zellweger, and Reese Witherspoon.
Nanci embodied the term “power publicist” in Hollywood. She was well-known for being strongly protective of her clients and also for her nurturing and caring side. Some of her career highlights included high-profile achievements and awards for her many clients, but Nanci liked to keep herself out of the spotlight. After losing her mother and not having any other relatives, many of her clients became lifelong friends and her “family of choice.”
In 2000, Nanci was diagnosed with breast cancer and became an unstoppable force who used her expertise as a publicist to help the breast cancer community. She participated in many fundraisers, along with her friends and supporters. After one year of aggressive treatment, Nanci went into remission.
"It was one of the best years of my life," said Nanci to The Hollywood Reporter. "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 January 2014, Nanci noticed that her voice started to become hoarse. She initially thought it was temporary due to overuse, but then her speech became slowed and uncontrollably slurred. Over the next seven months, Nanci would consult with many medical experts — which included ear, nose, and throat specialists, dentists, a speech pathologist, gastroenterologists, and neurologists — across three states. She also endured myriad invasive medical tests.
It was early August 2014, when Nanci received a definitive diagnosis that she had bulbar ALS. After learning the news, she made the difficult decision to step down from her active role at BWR but agreed to informally advise some of her former clients and friends. When she was later asked what she missed the most about her work, Nanci replied, “Everything."
In the midst of all this, the global outpouring of support for the ALS community from the 2014 ALS Ice Bucket Challenge was happening. This grassroots movement raised over $220 million worldwide and created unprecedented awareness about ALS. Soon after Nanci’s diagnosis, her friend Reese Witherspoon dedicated her Ice Bucket Challenge to her. Nanci then knew it was time to go public. She dedicated herself to raising awareness and funds in support of people with ALS and to advancing the search for effective treatments and cures.
“I have always had a fascination for medicine, and - thanks to the Internet - I’ve become a tireless researcher,” said Nanci. “Having already faced breast cancer, the only power I have ever felt over the adversity of a life-threatening illness was knowledge. When I was diagnosed with bulbar ALS, I had to know the specifics of the disease. But more importantly, I had to know who was at the forefront fighting it.”
In October 2014, Nanci connected with the Golden West Chapter of The ALS Association and decided to participate in the Los Angeles Walk to Defeat ALS. Friends, former clients and colleagues, and industry notables participated along Nanci’s side to show their support of her public acknowledgment of her diagnosis. These included Walk Team Co-Captains Renée Zellweger and Courteney Cox, CAA's Kevin Huvane and Bryan Lourd, and celebrities like Jennifer Garner, Jeffrey Katzenberg, Emmy Rossum, and Reese Witherspoon. Renée also spoke to the crowd during the Walk’s opening ceremonies, and through their dedicated efforts, Team Nanci was the top fundraising team.
"Having spent my entire professional career providing public relations counsel to hundreds of actors and entertainers, I was no stranger to the value of their influence in bringing attention to far-ranging issues,” said Nanci. “ALS would be no exception. I saw what Michael J. Fox was able to do for Parkinson's Disease and was determined to follow his example. With the support of clients past and present, Renée Zellweger, Reese Witherspoon, Emmy Rossum, and many others, I immediately decided I would commit my energies to support awareness efforts that would translate into additional funding for research.”
“Honestly, I can’t say enough about the importance of connecting and becoming part of this community,” said Renée Zellweger. “When Nanci was diagnosed, we didn’t know what to do. And then we found The ALS Association Golden West Chapter. When you they’re doing anything that is viable in terms of available treatment and science. They are on top of, and they can help to facilitate your access to it.”
Although Nanci soon lost her ability to talk, she did not lose the power of her voice. In November 2014, she agreed to appear in an episode of the TV show, "The Doctors" with long time friend, Emmy Rossum. It was the first time ever that Nanci appeared on television for an interview.
Nanci's many efforts to raise ALS awareness and funds in support of the ALS community have been widely recognized. In 2015, Nanci was honored as one of The Hollywood’s Reporter’s “100 Most Powerful Women,” and her friend, co-founder and former CEO of DreamWorks Animation, Jeffrey Katzenberg, was there to read a letter from her to the audience on her behalf. The following is an excerpt from Nanci’s acceptance speech, which can be viewed in its entirety here.
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“I’m not going to sugarcoat this. This is a terrible disease. I’m not going to lie. I cry. But I also laugh. And because I have bulbar onset ALS, sometimes I can’t control if I’m laughing or crying, so if you see me doing either, you know why. Let me be the only one to say this in this room. Thank God for email... |
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… Before I stepped down from BWR, I was a publicist whose job it was to help open a movie, win someone an Oscar or help sell any kind of message that needed selling. But I could not have predicted how powerful my message one woman with a disease who wants a cure has become. Hollywood is a good place, filled with good people. You, my friends right here, have changed the profile of this enemy, turned the Ice Bucket Challenge into a sensation, and supported me through the uncertainty of a fatal disease. I cannot say thank you enough... |
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…I know everyone here can change conversations. You are the world’s greatest storytellers after all. ….. So I’m not going to call you and harass you about this after today. But I might occasionally send you a pushy email, okay? I’m still a publicist at heart." |
"Nanci Ryder is an extraordinary advocate for the ALS community and the mission of the Golden West Chapter,” shared Fred Fisher, President & CEO of the Golden West Chapter of The ALS Association.
"ALS is a progressive disease where a person has to constantly adapt to losing the ability to speak, swallow, move, and breathe. In the face of living with these challenges, she found a way to both thrive and help others. Nanci’s indomitable spirit and commitment to fight against ALS on behalf of all in the ALS community have raised unprecedented awareness and support through local and national media coverage. She turned her own personal battle into an opportunity to inspire support for the thousands and thousands of families facing this devastating disease and to advance the search for effective treatments and cures for ALS."
"Her dedication has taught all of us how to confront obstacles and keep our eyes firmly focused on making the world a better place. It is a privilege to have known her.”
In 2016, the Golden West Chapter nominated Nanci for The ALS Association’s national “Hero Award,” which she accepted on behalf of everyone living with ALS and everyone supporting the search for effective treatments and cures.
As the disease progressed, Nanci began to incrementally lose her cherished independence. She had lost her voice and, soon after, her ability to walk, sit up voluntarily, and eat on her own. Still, she was able to express her feistiness and dynamic personality through salty phrases she would type out on an iPad, or she would hold up signs that a friend had custom-made for her saying things like "Shoe shopping, please," or "I can hear. I just can't speak."
In an article from The Hollywood Reporter about Nanci’s diagnosis, talent agent and Nanci’s former employee, Nicole Perna, shares,“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."
Nanci’s indomitable “Never Give Up” spirit and Team Nanci’s commitment to fight against ALS on behalf of all who are impacted by this devastating disease have generated unprecedented ALS awareness and support by capturing the attention of local and national media. Over the years, there have been hundreds of articles and interviews about Nanci’s story featured by media outlets such as The Hollywood Reporter, People, Access Hollywood, Entertainment Tonight, Variety, Brain & Life, NBC, CBS, ABC, FOX, KTLA, and many others.
Becoming an unofficial public spokesperson for the ALS community was a challenge for Nanci, as she was used to being just outside of the spotlight. But the sudden attention did have some benefits. For example, after four decades, she was reconnected with her ex-husband, Paul Ryder, after he saw a news story about her. He made several trips to visit her and even joined Team Nanci at the Los Angeles Walk to Defeat ALS.
"I'm blown away by the number of people who show up for her," said Paul. "There was a poster someone held up at the walk that said 'wickedly funny.' She always was."
Nanci expressed her gratitude directly to The Hollywood Reporter and the magazine's staff writer, Chris Gardner, when they were honored with the 2017 Essey Spotlight Award for their ongoing efforts to raise ALS awareness at the Golden West Chapter's Champions for Care and a Cure. It was Chris Gardner who conducted the first personal interview Nanci ever gave in her three decades in Hollywood, which was published about two months after she was diagnosed with ALS. At the Champions event, At the Champions event, Renée Zellweger was by Nanci's side to read remarks on her behalf.
"I was a publicist for 30 years — and a damn good one, too — but I had a rule that I would never be in the spotlight. That belonged to my brilliant clients. They should shine, not me. I liked it that way. However, we can't always get what we want in life."
"I didn't want breast cancer, but I got it and I beat it. I didn't want ALS, but I got it and in order to beat it, I had to say yes to that interview. I had to step out of the shadows and into the spotlight. I knew that I would have control over my words and my outfit, so I said yes. The other reason I granted that interview was because the request came from The Hollywood Reporter and from Chris Gardner. I knew that he would get it right."
"Covering Nanci Ryder's story changed my life,” said Chris Gardner. “Thanks to Nanci's generosity in sharing her journey, I was allowed to watch her step out from behind-the-scenes to take on a new role as an activist fighting for a cure for ALS. For six years, she has allowed me to experience her humor, witness her tears and triumphs while being continually humbled by her bravery, courage, and commitment as she faced this new reality head on. I know she was not comfortable with a photographer's lens or a tape recorder pointed in her direction. But she did it for the sake of a greater good.”
Another strong advocate in sharing Nanci’s story is Elex Michaelson, FOX 11 news anchor and perennial Los Angeles Walk to Defeat ALS emcee, who has been a long time champion for raising ALS awareness and support for the mission of the Golden West Chapter.
“Nanci Ryder was hilarious, spunky, wise, talented, and unforgettable. I met her shortly after her diagnosis. We did the Ice Bucket Challenge together, attended fundraisers and every ALS walk side by side. One of the great privileges of my career has been getting to tell her story., after she helped craft stories for so many others. She's changed my life, and I'm committed to doing whatever I can to help The ALS Association Golden West Chapter in Nanci's memory."
Each year since 2014, Team Nanci has been the top fundraising team at the Los Angeles County Walk to Defeat ALS. To date, they have raIsed over $820,000 and there have been over 620 participants and supporters on Team Nanci, who — along with Courteney Cox, Reese Witherspoon, and Renée Zellweger — have included Justine Bateman, Matt Bomer, Michael Chiklis, Don Diamont, Sarah Michelle Gellar, Angie Harmon, Peter Horton, Kate Linder, Billie Lourd, Bryan Lourd, Katharine McPhee, Vera Wang, Lawrence Zarian, and Daphne Zuniga.
In 2018, Nanci was celebrated with the Los Angeles Walk Hero Award for her work to raise awareness and funds in support of the mission of the Golden West Chapter. At that event, Nanci’s acceptance speech was read by her friend, Don Diamont, from CBS’ Young and the Restless and Bold and the Beautiful. The following is an excerpt from the presentation or you can watch the full speech here.
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“The one thing that ALS cannot and will not take away from me is… LOVE. My love for each and every one of my friends for joining me on this terrible and crazy journey. My love for each of you for being brave and tenacious enough to be here today to stand up for those that YOU love. My love for this wonderful day that we are all sharing here together. |
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I never intended to be courageous or inspirational, but according to this award apparently I am. So I ask you all today to promise me that – no matter what – that you will never, ever give up. That is another thing that ALS cannot take away – our will to keep going. |
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Every one of you is essential in the search for effective treatments and cures. Thank you for all you are doing and will do to help.” |
In addition to her efforts to raise ALS awareness and funding, Nanci was an active participant and supporter in ALS research. "She was kind and generous enough to give a blood sample, and from that we were able to manipulate her cells to make motor nerve cells, (which are) the cells that degenerate in ALS," said Justin Ichida, PhD, who is studying the genetic underpinnings of ALS at the University of Southern California. "When we make cells in the lab, they degenerate more rapidly than a normal person's nerve cells. That allows us to understand what makes these motor neurons die and test new treatments. So far, very few approved drugs have any effect on these cells."
By 2019, Nanci could no longer make any voluntary movements. She could only communicate by responding to questions and then staring at signs hung on her wall that said “Yes” and “No.” Yet, her mind was as engaged as ever and she still managed to smile during special moments. Through these most challenging times, her closest friends became her caregivers, and her former nurses, twins Jerome and Jerald Cowan, are there for her 24 hours each day.
In February 2019, Nanci and several of her closest friends, including Courteney Cox and Renée Zellweger, decided to share their stories in the "Voice Your Love" campaign to raise awareness about ALS and one of its many debilitating symptoms — losing the ability to speak.
“When Nanci was diagnosed with ALS, I wasn’t sure how she was going to handle it personally and professionally,” said Joan Hayman, who has been friends with Nanci for over 50 years.”But the way she handled it was by getting right out there in front of it, and that is the essence of Nanci.”
As Nanci’s disease continued to progress, members of Team Nanci remained committed to their friend and to continuing her work as an ALS advocate. These have included interviews on FOX 11 with Elex Michaelson as well as special appearances on major television shows like Ellen and Jimmy Kimmel Live! In addition, Renée personally thanked Nanci in her Best Actress acceptance speeches for the 2020 Golden Globes and Academy Awards.
In a recent article for Brain & Life, Courteney Cox shared, “It’s hard because the communication isn’t what it used to be…. all I want to do is just let her know that I love her, and I’m here.”
"When Nanci was first diagnosed, I didn't know anything about ALS beyond the name," added Renée Zellweger. "I didn't know that a body could do that—that it could just stop working, one piece at a time, and give no warning about what's next.”
“You're not born knowing how to manage something like this with grace,” Renée continued. “Every time I see her, I don't know what to expect in terms of how she'll be or how my own emotions will be. But like any friendship, it has stages and evolves. You adapt. You trust that the love you feel will help you navigate. I have accepted that this is how I will go forward in our friendship. I will continue to love her, to advocate for her, and to show up."
"Nanci was always so grateful for the love and support from her friends,” shared Kathy Shawver-Maffei, a longtime friend who also serves on the Board of Directors for the Golden West Chapter. “It's truly amazing. We take the good and bad and make it work the best we can. She was always determined to educate people about ALS, raise money, and find a cure."
In an article for the California Institute for Regenerative Medicine, Nanci shared her personal thoughts about helping to champion research and care. "We cannot always derive the benefits of our efforts for ourselves, but we can help others. That is my life’s path.”
As we mourn the loss of our friend, we celebrate her legacy as a champion for the advancement of ALS awareness, research, and multidisciplinary care. Donations in Nanci’s memory can be made online at www.TeamNanci.org.
Team Nanci will continue to support Nanci’s dream of finding treatments and cures for ALS and will participate in the 2020 virtual Los Angeles Walk to Defeat ALS. In recognition of Nanci and Team Nanci’s dedication to powering our vision - to create a world without ALS - as well as our mission-critical programs and services, we invite you to sign up and participate in a Golden West Chapter Walk to Defeat ALS event. With your strong support, we will continue to serve people with ALS and their loved ones and advance the search for effective treatments and cures.
It is only together that we will defeat ALS.
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style."
– Maya Angelou, American poet, singer, memoirist, and civil rights activist
It is difficult to define any person by a single word, especially one who is a trailblazer in their industry, a caring and loyal friend, and someone who isn’t afraid to fight for what they believe in. However, when describing Nanci Ryder, the word “remarkable” is often the one chosen.
On June 11, 2020, after a nearly seven year battle with amyotrophic lateral sclerosis (ALS), Nanci died peacefully at her home, surrounded by her family of close friends.
Born and raised in Long Island, New York, Nanci was always an independent person. In 1979, she moved to Los Angeles and found her passion working in public relations. Her first job was as a talent agent at David Shapira & Associates, and she worked there for three years before she transitioned into publicity. Nanci then worked at Goldberg-Ehrlich Public Relations and Michael Levine Public Relations before starting out on her own in 1984.
"I was the least likely to succeed," Nanci said in an interview with The Hollywood Reporter. "I didn't go to college. I got married (and later divorced) 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."
Working at first from her apartment, Nanci began her business with one client - Michael J. Fox. She soon expanded her talent roster to include Robert Downey Jr., Sarah Jessica Parker, Leonardo DiCaprio, Helen Hunt, Woody Harrelson, Paul Reiser, Paul Rodriguez, and soap star Don Diamont. She opened an office for her firm, Ryder Public Relations, and recruited another publicist, Jay Schwartz, from New York, who would become a lifelong friend.
“I remember my first day, I brought a cardboard box with me to work, and it had all my stuff in it,” said Jay Schwartz. “Something just clicked between us. We would laugh and just have a blast together. We sat on the floor next to each other and made phone calls and tried to get work done. We weren't making a lot of money, but we had fun and made the most of it. Our running joke was that if we could just sign one more client at $1,500, then all of our bills would be paid.”
In 1987, Nanci co-founded BWR Public Relations with Paul Baker and Larry Winokur. Through her grit and perseverance, she became one of the most highly sought-after publicists, working with many A-List celebrities such as Courteney Cox, Renée Zellweger, and Reese Witherspoon.
Nanci embodied the term “power publicist” in Hollywood. She was well-known for being strongly protective of her clients and also for her nurturing and caring side. Some of her career highlights included high-profile achievements and awards for her many clients, but Nanci liked to keep herself out of the spotlight. After losing her mother and not having any other relatives, many of her clients became lifelong friends and her “family of choice.”
In 2000, Nanci was diagnosed with breast cancer and became an unstoppable force who used her expertise as a publicist to help the breast cancer community. She participated in many fundraisers, along with her friends and supporters. After one year of aggressive treatment, Nanci went into remission.
"It was one of the best years of my life," said Nanci to The Hollywood Reporter. "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 January 2014, Nanci noticed that her voice started to become hoarse. She initially thought it was temporary due to overuse, but then her speech became slowed and uncontrollably slurred. Over the next seven months, Nanci would consult with many medical experts — which included ear, nose, and throat specialists, dentists, a speech pathologist, gastroenterologists, and neurologists — across three states. She also endured myriad invasive medical tests.
It was early August 2014, when Nanci received a definitive diagnosis that she had bulbar ALS. After learning the news, she made the difficult decision to step down from her active role at BWR but agreed to informally advise some of her former clients and friends. When she was later asked what she missed the most about her work, Nanci replied, “Everything."
In the midst of all this, the global outpouring of support for the ALS community from the 2014 ALS Ice Bucket Challenge was happening. This grassroots movement raised over $220 million worldwide and created unprecedented awareness about ALS. Soon after Nanci’s diagnosis, her friend Reese Witherspoon dedicated her Ice Bucket Challenge to her. Nanci then knew it was time to go public. She dedicated herself to raising awareness and funds in support of people with ALS and to advancing the search for effective treatments and cures.
“I have always had a fascination for medicine, and - thanks to the Internet - I’ve become a tireless researcher,” said Nanci. “Having already faced breast cancer, the only power I have ever felt over the adversity of a life-threatening illness was knowledge. When I was diagnosed with bulbar ALS, I had to know the specifics of the disease. But more importantly, I had to know who was at the forefront fighting it.”
In October 2014, Nanci connected with the Golden West Chapter of The ALS Association and decided to participate in the Los Angeles Walk to Defeat ALS. Friends, former clients and colleagues, and industry notables participated along Nanci’s side to show their support of her public acknowledgment of her diagnosis. These included Walk Team Co-Captains Renée Zellweger and Courteney Cox, CAA's Kevin Huvane and Bryan Lourd, and celebrities like Jennifer Garner, Jeffrey Katzenberg, Emmy Rossum, and Reese Witherspoon. Renée also spoke to the crowd during the Walk’s opening ceremonies, and through their dedicated efforts, Team Nanci was the top fundraising team.
"Having spent my entire professional career providing public relations counsel to hundreds of actors and entertainers, I was no stranger to the value of their influence in bringing attention to far-ranging issues,” said Nanci. “ALS would be no exception. I saw what Michael J. Fox was able to do for Parkinson's Disease and was determined to follow his example. With the support of clients past and present, Renée Zellweger, Reese Witherspoon, Emmy Rossum, and many others, I immediately decided I would commit my energies to support awareness efforts that would translate into additional funding for research.”
“Honestly, I can’t say enough about the importance of connecting and becoming part of this community,” said Renée Zellweger. “When Nanci was diagnosed, we didn’t know what to do. And then we found The ALS Association Golden West Chapter. When you they’re doing anything that is viable in terms of available treatment and science. They are on top of, and they can help to facilitate your access to it.”
Although Nanci soon lost her ability to talk, she did not lose the power of her voice. In November 2014, she agreed to appear in an episode of the TV show, "The Doctors" with long time friend, Emmy Rossum. It was the first time ever that Nanci appeared on television for an interview.
Nanci's many efforts to raise ALS awareness and funds in support of the ALS community have been widely recognized. In 2015, Nanci was honored as one of The Hollywood’s Reporter’s “100 Most Powerful Women,” and her friend, co-founder and former CEO of DreamWorks Animation, Jeffrey Katzenberg, was there to read a letter from her to the audience on her behalf. The following is an excerpt from Nanci’s acceptance speech, which can be viewed in its entirety here.
|
“I’m not going to sugarcoat this. This is a terrible disease. I’m not going to lie. I cry. But I also laugh. And because I have bulbar onset ALS, sometimes I can’t control if I’m laughing or crying, so if you see me doing either, you know why. Let me be the only one to say this in this room. Thank God for email... |
|
… Before I stepped down from BWR, I was a publicist whose job it was to help open a movie, win someone an Oscar or help sell any kind of message that needed selling. But I could not have predicted how powerful my message one woman with a disease who wants a cure has become. Hollywood is a good place, filled with good people. You, my friends right here, have changed the profile of this enemy, turned the Ice Bucket Challenge into a sensation, and supported me through the uncertainty of a fatal disease. I cannot say thank you enough... |
|
…I know everyone here can change conversations. You are the world’s greatest storytellers after all. ….. So I’m not going to call you and harass you about this after today. But I might occasionally send you a pushy email, okay? I’m still a publicist at heart." |
"Nanci Ryder is an extraordinary advocate for the ALS community and the mission of the Golden West Chapter,” shared Fred Fisher, President & CEO of the Golden West Chapter of The ALS Association.
"ALS is a progressive disease where a person has to constantly adapt to losing the ability to speak, swallow, move, and breathe. In the face of living with these challenges, she found a way to both thrive and help others. Nanci’s indomitable spirit and commitment to fight against ALS on behalf of all in the ALS community have raised unprecedented awareness and support through local and national media coverage. She turned her own personal battle into an opportunity to inspire support for the thousands and thousands of families facing this devastating disease and to advance the search for effective treatments and cures for ALS."
"Her dedication has taught all of us how to confront obstacles and keep our eyes firmly focused on making the world a better place. It is a privilege to have known her.”
In 2016, the Golden West Chapter nominated Nanci for The ALS Association’s national “Hero Award,” which she accepted on behalf of everyone living with ALS and everyone supporting the search for effective treatments and cures.
As the disease progressed, Nanci began to incrementally lose her cherished independence. She had lost her voice and, soon after, her ability to walk, sit up voluntarily, and eat on her own. Still, she was able to express her feistiness and dynamic personality through salty phrases she would type out on an iPad, or she would hold up signs that a friend had custom-made for her saying things like "Shoe shopping, please," or "I can hear. I just can't speak."
In an article from The Hollywood Reporter about Nanci’s diagnosis, talent agent and Nanci’s former employee, Nicole Perna, shares,“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."
Nanci’s indomitable “Never Give Up” spirit and Team Nanci’s commitment to fight against ALS on behalf of all who are impacted by this devastating disease have generated unprecedented ALS awareness and support by capturing the attention of local and national media. Over the years, there have been hundreds of articles and interviews about Nanci’s story featured by media outlets such as The Hollywood Reporter, People, Access Hollywood, Entertainment Tonight, Variety, Brain & Life, NBC, CBS, ABC, FOX, KTLA, and many others.
Becoming an unofficial public spokesperson for the ALS community was a challenge for Nanci, as she was used to being just outside of the spotlight. But the sudden attention did have some benefits. For example, after four decades, she was reconnected with her ex-husband, Paul Ryder, after he saw a news story about her. He made several trips to visit her and even joined Team Nanci at the Los Angeles Walk to Defeat ALS.
"I'm blown away by the number of people who show up for her," said Paul. "There was a poster someone held up at the walk that said 'wickedly funny.' She always was."
Nanci expressed her gratitude directly to The Hollywood Reporter and the magazine's staff writer, Chris Gardner, when they were honored with the 2017 Essey Spotlight Award for their ongoing efforts to raise ALS awareness at the Golden West Chapter's Champions for Care and a Cure. It was Chris Gardner who conducted the first personal interview Nanci ever gave in her three decades in Hollywood, which was published about two months after she was diagnosed with ALS. At the Champions event, At the Champions event, Renée Zellweger was by Nanci's side to read remarks on her behalf.
"I was a publicist for 30 years — and a damn good one, too — but I had a rule that I would never be in the spotlight. That belonged to my brilliant clients. They should shine, not me. I liked it that way. However, we can't always get what we want in life."
"I didn't want breast cancer, but I got it and I beat it. I didn't want ALS, but I got it and in order to beat it, I had to say yes to that interview. I had to step out of the shadows and into the spotlight. I knew that I would have control over my words and my outfit, so I said yes. The other reason I granted that interview was because the request came from The Hollywood Reporter and from Chris Gardner. I knew that he would get it right."
"Covering Nanci Ryder's story changed my life,” said Chris Gardner. “Thanks to Nanci's generosity in sharing her journey, I was allowed to watch her step out from behind-the-scenes to take on a new role as an activist fighting for a cure for ALS. For six years, she has allowed me to experience her humor, witness her tears and triumphs while being continually humbled by her bravery, courage, and commitment as she faced this new reality head on. I know she was not comfortable with a photographer's lens or a tape recorder pointed in her direction. But she did it for the sake of a greater good.”
Another strong advocate in sharing Nanci’s story is Elex Michaelson, FOX 11 news anchor and perennial Los Angeles Walk to Defeat ALS emcee, who has been a long time champion for raising ALS awareness and support for the mission of the Golden West Chapter.
“Nanci Ryder was hilarious, spunky, wise, talented, and unforgettable. I met her shortly after her diagnosis. We did the Ice Bucket Challenge together, attended fundraisers and every ALS walk side by side. One of the great privileges of my career has been getting to tell her story., after she helped craft stories for so many others. She's changed my life, and I'm committed to doing whatever I can to help The ALS Association Golden West Chapter in Nanci's memory."
Each year since 2014, Team Nanci has been the top fundraising team at the Los Angeles County Walk to Defeat ALS. To date, they have raIsed over $820,000 and there have been over 620 participants and supporters on Team Nanci, who — along with Courteney Cox, Reese Witherspoon, and Renée Zellweger — have included Justine Bateman, Matt Bomer, Michael Chiklis, Don Diamont, Sarah Michelle Gellar, Angie Harmon, Peter Horton, Kate Linder, Billie Lourd, Bryan Lourd, Katharine McPhee, Vera Wang, Lawrence Zarian, and Daphne Zuniga.
In 2018, Nanci was celebrated with the Los Angeles Walk Hero Award for her work to raise awareness and funds in support of the mission of the Golden West Chapter. At that event, Nanci’s acceptance speech was read by her friend, Don Diamont, from CBS’ Young and the Restless and Bold and the Beautiful. The following is an excerpt from the presentation or you can watch the full speech here.
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“The one thing that ALS cannot and will not take away from me is… LOVE. My love for each and every one of my friends for joining me on this terrible and crazy journey. My love for each of you for being brave and tenacious enough to be here today to stand up for those that YOU love. My love for this wonderful day that we are all sharing here together. |
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I never intended to be courageous or inspirational, but according to this award apparently I am. So I ask you all today to promise me that – no matter what – that you will never, ever give up. That is another thing that ALS cannot take away – our will to keep going. |
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Every one of you is essential in the search for effective treatments and cures. Thank you for all you are doing and will do to help.” |
In addition to her efforts to raise ALS awareness and funding, Nanci was an active participant and supporter in ALS research. "She was kind and generous enough to give a blood sample, and from that we were able to manipulate her cells to make motor nerve cells, (which are) the cells that degenerate in ALS," said Justin Ichida, PhD, who is studying the genetic underpinnings of ALS at the University of Southern California. "When we make cells in the lab, they degenerate more rapidly than a normal person's nerve cells. That allows us to understand what makes these motor neurons die and test new treatments. So far, very few approved drugs have any effect on these cells."
By 2019, Nanci could no longer make any voluntary movements. She could only communicate by responding to questions and then staring at signs hung on her wall that said “Yes” and “No.” Yet, her mind was as engaged as ever and she still managed to smile during special moments. Through these most challenging times, her closest friends became her caregivers, and her former nurses, twins Jerome and Jerald Cowan, are there for her 24 hours each day.
In February 2019, Nanci and several of her closest friends, including Courteney Cox and Renée Zellweger, decided to share their stories in the "Voice Your Love" campaign to raise awareness about ALS and one of its many debilitating symptoms — losing the ability to speak.
“When Nanci was diagnosed with ALS, I wasn’t sure how she was going to handle it personally and professionally,” said Joan Hayman, who has been friends with Nanci for over 50 years.”But the way she handled it was by getting right out there in front of it, and that is the essence of Nanci.”
As Nanci’s disease continued to progress, members of Team Nanci remained committed to their friend and to continuing her work as an ALS advocate. These have included interviews on FOX 11 with Elex Michaelson as well as special appearances on major television shows like Ellen and Jimmy Kimmel Live! In addition, Renée personally thanked Nanci in her Best Actress acceptance speeches for the 2020 Golden Globes and Academy Awards.
In a recent article for Brain & Life, Courteney Cox shared, “It’s hard because the communication isn’t what it used to be…. all I want to do is just let her know that I love her, and I’m here.”
"When Nanci was first diagnosed, I didn't know anything about ALS beyond the name," added Renée Zellweger. "I didn't know that a body could do that—that it could just stop working, one piece at a time, and give no warning about what's next.”
“You're not born knowing how to manage something like this with grace,” Renée continued. “Every time I see her, I don't know what to expect in terms of how she'll be or how my own emotions will be. But like any friendship, it has stages and evolves. You adapt. You trust that the love you feel will help you navigate. I have accepted that this is how I will go forward in our friendship. I will continue to love her, to advocate for her, and to show up."
"Nanci was always so grateful for the love and support from her friends,” shared Kathy Shawver-Maffei, a longtime friend who also serves on the Board of Directors for the Golden West Chapter. “It's truly amazing. We take the good and bad and make it work the best we can. She was always determined to educate people about ALS, raise money, and find a cure."
In an article for the California Institute for Regenerative Medicine, Nanci shared her personal thoughts about helping to champion research and care. "We cannot always derive the benefits of our efforts for ourselves, but we can help others. That is my life’s path.”
As we mourn the loss of our friend, we celebrate her legacy as a champion for the advancement of ALS awareness, research, and multidisciplinary care. Donations in Nanci’s memory can be made online at www.TeamNanci.org.
Team Nanci will continue to support Nanci’s dream of finding treatments and cures for ALS and will participate in the 2020 virtual Los Angeles Walk to Defeat ALS. In recognition of Nanci and Team Nanci’s dedication to powering our vision - to create a world without ALS - as well as our mission-critical programs and services, we invite you to sign up and participate in a Golden West Chapter Walk to Defeat ALS event. With your strong support, we will continue to serve people with ALS and their loved ones and advance the search for effective treatments and cures.
It is only together that we will defeat ALS.
