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Spotlight on…. Stacy Title
Trailblazer in Hollywood and as an ALS Advocate

Stacy Title
Stacy Title

“I have always believed and always taught my kids they can do whatever they want. I've tried to live that life. Why should I stop doing what I love?" - Stacy Title

The Golden West Chapter celebrates the life and legacy of Oscar-nominated filmmaker, Stacy Title, a trailblazer throughout her career as a journalist, screenwriter, and filmmaker, as well as an advocate for women in film and people living with ALS. 

Stacy as a child

Born and raised in New York, Stacy was the daughter of a successful commercial producer. She had watched her father work with notable directors such as Michael Cimino,  Ridley Scott, and his brother, Tony Scott and knew early on she wanted to be a filmmaker. “When I was very, very young, watching, ‘A Clockwork Orange,’ was a profound moment for me because Kubrick managed to make us, the audience, feel the way the characters in the movie were feeling,” Stacy said, in an interview with Celluloid Magazine. “I was blown away by the possibility that you could move people through the great metaphoric connections that movie made. That was what really said to me that film-making was such a great artform. "

Stacy Title and Jonathan Penner Wedding.png
Stacy Title and Jonathan Penner, during their courtship and at their wedding

After graduating magna cum laude from Brown University, Stacy began her career as a journalist, writing and editing over a hundred articles for numerous New York publications. As a founding editor of New York Woman Magazine and freelancing for publications such as Harper's Bazaar, Premiere and US Magazine, she began writing screenplays during her free time and was quick to find an agent. Subsequently, she worked as a screenwriter. 

Stacy had a close relationship with her first cousin, Daena Title, and her husband, actor Jason Alexander, who later became famous for his work on “Seinfeld”. One evening, Jason invited a friend and fellow cast member of the film,“White Palace”, Jonathan Penner, to go out to dinner with all of them. Soon after Stacy and Jonathan met, they were inseparable. They fell in love and they began collaborating on projects, writing and producing together. In 1990 they moved to Los Angeles to pursue their careers in the movie business.  A year later, they came back east to get married on the rooftop of Silvercup Studios in Queens. 

Stacy and Jonathan at the 1994 Academy Awards

In 1993, the two of them co-wrote “Down on the Waterfront'', which was Stacy's first major directing project. The story, which was loosely based on a series of real events with Stacy’s father, chronicles two early-career filmmakers, eager to make a feature film, who meet with officials looking to improve the tarnished reputation of the longshoreman's union. The short film, which featured multi-Emmy and Golden Globe Award winning actor Edward Asner along with Jonathan and Jason, was nominated for the Academy Award for Best Live Action Short Film in 1994. This earned Stacy the distinction of being the then youngest woman ever nominated in the live-action short film category.

Poster from Stacy’s first feature film, “The Last Supper.”

Her debut feature film as a director came in 1995. “The Last Supper,” details the lives of five graduate students who suddenly murder a bigoted, ultra right-wing dinner guest and then, thinking they are onto something, decide to keep going, ridding society of its most offensive members.

The film again featured Jonathan and Jason, along with actors Cameron Diaz, Annabeth Gish, and Courtney B. Vance, along with impressive cameos from Bill Paxton, Mark Harmon, and Ron Perlman.  In addition, Stacy and Jonathan served as co-executive producers on the film.

Jonathan and Stacy with their kids

This was the same year that Stacy and Jonathan became parents, welcoming son, Cooper Keaton Penner. Then, three years later came their second child Ellis Penner. Stacy loved her new role as a mother, and the family was very active. As parents, Stacy and Jonathan treated the kids as individuals. Jonathan told me, ‘Stacy always wanted to support them and encourage them and just keep them safe. She always said if they didn’t come home dirty we were doing something wrong!’ The family loved to travel, both in the United States and abroad, and the kids grew up with a love of theatre, books and of course, movies.

Over the next 12 years, Stacy and Jonathan continued to collaborate and work together on various projects while continuing to advance in their careers independently. The two co-wrote the script for a reimagining of “The Lone Ranger,” as well as worked on developing a “King Kong,” television series. Stacy gravitated toward the crime thriller and horror genre with “Let the Devil Wear Black”, based on Shakespear’s “Hamlet,” which she also co-wrote with Jonathan, and the “Snoop Dogg’s Hood of Horror.

“My favorites and greatest genre influences include Kubrick, Cronenberg, Polanski, Von Trier, DePalma and the grandmaster Hitchcock,” Stacy shared in an interview. “There’s an emotionality and brilliance to these filmmakers and their work that transcends even horror. For me, horror works only when it has palpable emotion. Their work lives in character, authenticity and emotional claustrophobia.”

Jonathan continued his work as a writer, producer, and actor, and as a reality contestant on three seasons on the CBS hit series, “Survivor”. Stacy worked as a director, both in television on the Hulu series, “Freakish,” and as a writer on more than 15 pilots for ABC, CBS, NBC, Showtime, WB, CW, AMC, Lifetime, and MTV among others. She also was an activist for screenwriters through the “Voices 4 Action” campaign.

Yet, in spite of her continued success, she faced many challenges as a female writer and director in Hollywood. The most recent “Inclusion in the Director’s Chair” report by researchers at the University of Southern California, included this sober fact: 83 percent of female directors have made just one movie in 11 years.

In an interview for Vulture, Jonathan shared that he had tallied up the days his wife has spent behind the camera during her 25-year career. The number was 99. “That’s four days a year,” he said. “That’s criminal.” 

In the article, Stacy and Jonathan also shared their experiences with the Weinstein Company acquiring the rights to their script, “The Bye Bye Man.” The couple met Bob Weinstein for the first time. They had barely begun talking, when Bob turned to Stacy. “I know this will make you mad, but I prefer to talk to your husband.” For the rest of the meeting, Bob addressed all his comments to Jonathan, and finally said that before they could proceed, Stacy would have to “try out” by shooting a sizzle reel of two scenes. It was a major professional insult, but Stacy, feeling she had no choice, agreed.  

Courtesy of Brian DouglasTHR-StacyTittle-1.jpg
Stacy Title as director on the set of The Bye Bye Man in 2015. Photo courtesy of Brian Douglas

Later, through their attorney, the Weinstein Company stated that, while the script showed a lot of merit, they had concerns about Stacy’s “...relative lack of experience directing,” and would be passing on the project. Luckily, the producer who’d been on the movie since the beginning was able to shift their financing plans to more supportive partners, and in 2015, Stacy shot The Bye Bye Man in a month, with a $7 million budget. The final film featured performances by Doug Jones, Douglas Smith and Carrie-Anne Moss, and was a commercial success, grossing triple its production budget, more than $27 million worldwide to date. In an interview for Movie Times, Stacy shared her perspectives on the story as well as many of the challenges facing women directors.

Photo of Jonathan and Stacy taken two months before her diagnosis. Photo courtesy of Alex Welsh

In August 2017, Stacy was rear-ended in a car accident. Within days, she noticed changes in her walking that seemed unrelated to her injuries. After her speech began to slur, Stacy underwent an exhausting series of tests, and was starting to suspect that the accident might have triggered something in her system. She worried that her symptoms could be related to ALS, as she had lost her maternal grandfather to the fatal, neurodegenerative disease.

Then, in December 2017, her worst fears were confirmed. "Stacy was officially diagnosed with familial ALS (FALS)," said Jonathan. "Frighteningly, around the same time, her mother was diagnosed with frontal-temporal dementia (FTD), another neurodegenerative disease which research has shown can have genetic forms related to ALS."

The disease moved so quickly it robbed Stacy of many physical capabilities in just weeks. She posted the news on Twitter in January 2018, and vowed to continue directing as long as possible. She also expressed her commitment to raise ALS awareness and called on the industry to consider the four pillars of inclusion- sex, race, age, and disability- when hiring.

Stacy at the hospital with long time friend, actor Cary Elwes

“The professional rejection I have battled for 25 years, as a female, pales in comparison to what I now face,” Stacy said. “But I am writing this because I want … to move you to make changes and begin to hire people who look and sound like me.”

Throughout 2018, the progression of the disease advanced at a frightening speed through Stacy’s body.

“By spring, she couldn’t walk, and by summer, she couldn’t talk or swallow,” shared Jonathan. “But Stacy is determined to keep working, and doing what she loves.”

Stacy enjoying the view of the outpouring of love and support

By September 14, 2018, Stacy had decided to have a tracheostomy to begin using a ventilator.  It was their 27th wedding anniversary, and she was not allowed to have flowers inside her hospital room. So Jonathan worked out an alternative solution, by placing flowers in the courtyard outside her window.

He contacted friends and families to join the effort and together they all filled the courtyard with hundreds and hundreds of gorgeous blossoms. The results were so moving that their story was featured by CBS Los Angeles.

 

Many in Hollywood were moved by Stacy’s positive attitude and determination to continue to direct, especially after being diagnosed with ALS. “Any skepticism about whether Stacy can be effective as a director stems from a misunderstanding of the job,” shared director Wash Westmoreland, who co-wrote and co-directed the Oscar Award-winning film, “Still Alice,” with his husband, Richard Glatzer, while Richard battled ALS himself. “Directing doesn’t have to mean barking orders, or wearing jodhpurs and cracking a riding whip. What’s essential is that a director has vision.”

“Sure, Stacy will need to be surrounded by a supportive crew and a bighearted cast,” he continued in an interview with Vulture. “But that’s just part of making any movie — having the right team in place.” 

Through her battle with the disease, Stacy’s dedication to her craft remained as strong as did her commitment to raising awareness about ALS. While using her wheelchair and ventilator, she directed, pro-bono, two public service announcements for The ALS Association, which featured herself and Jonathan as well as reunited her with her friend, actor/producer Courtney B. Vance, who had lost his mother to ALS the same year Stacy was diagnosed. Because she could no longer speak, Stacy used a retina scanning machine to communicate via a laptop and speaker, and used an electronic voice with a British accent.

 

Stacy continued to focus her efforts on filmmaking and storytelling. “My time is precious,” she wrote. “I want to work. I am a director, wheelchair-bound or not.” With Jonathan’s assistance, she made plans to direct one final movie, “Walking Time Bomb”, with Jason Alexander, Bob Odenkirk, and long-time friend Cary Elwes, and her efforts were featured in The Hollywood Reporter. Unfortunately, the movie did not find a funding source, but all involved noted that her “never give up” attitude was remarkable. “To have survived in this business to the point where #MeToo is finally changing things, and now to be hit with this is literally an insult to injury,” Stacy wrote. “And yet, here we are.”

Stacy at home with Yul Kwon in 2019

Stacy’s courage and determination to not let her illness define hard-earned her, earned her industry wide respect and admiration. Jonathan's relationship with CBS led the two to be featured on CBS Cares public service announcement, to help raise awareness to ALS. Their efforts and positive influence inspired Yul Kwon, a friend and fellow competitor of “Survivor,” to share Stacy’s story through his work at Google, as well as return for season 40 of the show and use the platform to raise awareness on TV. "No family should have to endure what Stacy, Jonathan, and their two children have endured, or make the hard choices they've had to make," said Yul. "Please join us in supporting them and the thousands of people who suffer from ALS today—and the many more lives that will be shattered unless we find a cure." CBS helped to promote his commitment, and to maximize the impact of this unprecedented effort, $50,000 in donations were personally matched by Yul. Together, they raised over $250,000 for The ALS Association.

Jonathan and Stacy at the 2019 Los Angeles Walk to Defeat ALS

Stacy and Jonathan continued their efforts to raise awareness and support for the ALS community. They participated in the Golden West Chapter’s Los Angeles Walk to Defeat ALS in 2019. As it became more difficult for Stacy to travel, Jonathan worked to continue her efforts to raise ALS awareness and support.

He had the opportunity to address many ALS advocates at The ALS Association’s annual ALS Advocacy Day and spoke about how families that face ALS have no choice other than to be courageous.

“You don’t find out you are brave until you have something to face bravely.”

Jonathan with others in Golden West Chapter’s delegation at the 2019 ALS Advocacy Day

As a part of the Golden West Chapter’s delegation of ALS advocates, he met directly with legislators to share Stacy’’s moving story and the impact on their family. “The ALS Association does great work building community, and I met some extraordinary people,” Jonathan shared.

“I admit, the process for asking for support from our elected officials was a sobering one. As a family member and primary caregiver of a person who was fighting the disease, it was hard to make incremental requests for support when the need and urgency for more help, faster was so clear."

“Slowly, steadily they’ve moved forward, but I always wanted to ask for more! It was an eye opening experience with incredible families and individuals from around the country. These are true heroes and I’m so glad I could be there."

Jonathan and the couple's two children worked together to make sure Stacy continued to live her life to the fullest. Cooper and Ellis moved home, and the whole family organized disco birthday parties and anniversary parties and outings to Disney Hall. And there were always movies to watch together.  Stacy required 24-hour care, and as her primary caretakers, they worked together to handle her every need whether it was dressing, bathing, moving, helping her to the bathroom, even placing a towel in her mouth every few minutes to absorb saliva. On May 18, 2019, the couple renewed their wedding vows before their 28th anniversary, surrounded by an outpouring of and support from longtime family and friends.

vows.png
Stacy and Jonathan at their vow renewal ceremony for their 28th anniversary, surrounded by family and friends near their home in the hollywood hills
Jonathan caring for Stacy on their last vacation together for their 29th wedding anniversary

Throughout 2020, the family kept on as best they could, but COVID-19 protocols were difficult. Stacy missed being touched by her friends, although many still came to visit in a distanced way, outside in the open air. By the fall, wildfires were prevalent in California and smoke hung heavily, making going outside impossible for Stacy and her eyes were always dry. 

For their 29th wedding anniversary in September, friends and loved ones sent videos of themselves and Stacy and Jonathan took one final vacation. Stacy had suggested Paris, her favorite city, but instead they went to Santa Monica. The weekend was perfect. Jonathan rolled Stacy’s wheelchair down the pier. He helped her get in the swimming pool, and, given her love of margaritas, he put some salt and a few tequila-flavored drops on her tongue. 

By December, every adult in the family, but Stacy, tested positive for COVID-19. A doctor recommended that she go to the hospital, but ultimately, they decided to keep Stacy at home as she had made it clear that was where she wanted to be. Additional nurses stepped in to care for her while Jonathan and the kids kept their distance, in quarantine. Sometimes Jonathan had to bellow down the corridor the books he was reading out loud to help keep his wife company. As the New Year approached, Stacy participated in a Zoom high school reunion. More than watching movies, in her final weeks, she preferred to be read to as she was losing her sight. Stacy died from ALS peacefully on January 11, 2021 after a more than three year battle with the disease. 

Stacy Title will be remembered for her humor, strength, and courage, along with her efforts to raise awareness and funds to benefit the ALS community. Even though she lost her ability to speak, Stacy raised her voice to help other women in the industry as well as those facing illness or disability.

“Oddly, I became a better director since having ALS,” Stacy once shared at an event for the Motion Picture Television Fund (MPTF).  “My illness has actually made my powers of observation stronger, giving me the ability to read people in a truer way.”

Stacy_and_Jonathan___Fullscreen_Page.jpg

“I still think, I still feel, and I am still in here. Life with ALS is still life. I can't laugh anymore, but I still find things funny. Sadness and joy still bring tears to my eyes. I see Jonathan in new ways with these newly honed powers of observation. Even after 30 years of looking at the man, he still just takes my breath away.”

“I'm a director. I like to tell stories and paint pictures and I refuse to say ‘fade out’. There is too much still to do. Instead, I'll just move on to the next scene, to the next problem to solve, to the next miracle.”

Our hearts go out to her family and loved ones. And deepest thanks to Amy Wallace at Vulture for her moving articles chronicling the family’s final days together. We are grateful to Stacy and Jonathan for their many efforts to ensure improved access to care and to accelerate the search for treatments and cures for ALS; for those living with the disease today and those who will be diagnosed tomorrow.

Spotlight on…. Stacy Title
Trailblazer in Hollywood and as an ALS Advocate

Stacy Title
Stacy Title

“I have always believed and always taught my kids they can do whatever they want. I've tried to live that life. Why should I stop doing what I love?" - Stacy Title

The Golden West Chapter celebrates the life and legacy of Oscar-nominated filmmaker, Stacy Title, a trailblazer throughout her career as a journalist, screenwriter, and filmmaker, as well as an advocate for women in film and people living with ALS. 

Stacy as a child

Born and raised in New York, Stacy was the daughter of a successful commercial producer. She had watched her father work with notable directors such as Michael Cimino,  Ridley Scott, and his brother, Tony Scott and knew early on she wanted to be a filmmaker. “When I was very, very young, watching, ‘A Clockwork Orange,’ was a profound moment for me because Kubrick managed to make us, the audience, feel the way the characters in the movie were feeling,” Stacy said, in an interview with Celluloid Magazine. “I was blown away by the possibility that you could move people through the great metaphoric connections that movie made. That was what really said to me that film-making was such a great artform. "

Stacy Title and Jonathan Penner Wedding.png
Stacy Title and Jonathan Penner, during their courtship and at their wedding

After graduating magna cum laude from Brown University, Stacy began her career as a journalist, writing and editing over a hundred articles for numerous New York publications. As a founding editor of New York Woman Magazine and freelancing for publications such as Harper's Bazaar, Premiere and US Magazine, she began writing screenplays during her free time and was quick to find an agent. Subsequently, she worked as a screenwriter. 

Stacy had a close relationship with her first cousin, Daena Title, and her husband, actor Jason Alexander, who later became famous for his work on “Seinfeld”. One evening, Jason invited a friend and fellow cast member of the film,“White Palace”, Jonathan Penner, to go out to dinner with all of them. Soon after Stacy and Jonathan met, they were inseparable. They fell in love and they began collaborating on projects, writing and producing together. In 1990 they moved to Los Angeles to pursue their careers in the movie business.  A year later, they came back east to get married on the rooftop of Silvercup Studios in Queens. 

Stacy and Jonathan at the 1994 Academy Awards

In 1993, the two of them co-wrote “Down on the Waterfront'', which was Stacy's first major directing project. The story, which was loosely based on a series of real events with Stacy’s father, chronicles two early-career filmmakers, eager to make a feature film, who meet with officials looking to improve the tarnished reputation of the longshoreman's union. The short film, which featured multi-Emmy and Golden Globe Award winning actor Edward Asner along with Jonathan and Jason, was nominated for the Academy Award for Best Live Action Short Film in 1994. This earned Stacy the distinction of being the then youngest woman ever nominated in the live-action short film category.

Poster from Stacy’s first feature film, “The Last Supper.”

Her debut feature film as a director came in 1995. “The Last Supper,” details the lives of five graduate students who suddenly murder a bigoted, ultra right-wing dinner guest and then, thinking they are onto something, decide to keep going, ridding society of its most offensive members.

The film again featured Jonathan and Jason, along with actors Cameron Diaz, Annabeth Gish, and Courtney B. Vance, along with impressive cameos from Bill Paxton, Mark Harmon, and Ron Perlman.  In addition, Stacy and Jonathan served as co-executive producers on the film.

Jonathan and Stacy with their kids

This was the same year that Stacy and Jonathan became parents, welcoming son, Cooper Keaton Penner. Then, three years later came their second child Ellis Penner. Stacy loved her new role as a mother, and the family was very active. As parents, Stacy and Jonathan treated the kids as individuals. Jonathan told me, ‘Stacy always wanted to support them and encourage them and just keep them safe. She always said if they didn’t come home dirty we were doing something wrong!’ The family loved to travel, both in the United States and abroad, and the kids grew up with a love of theatre, books and of course, movies.

Over the next 12 years, Stacy and Jonathan continued to collaborate and work together on various projects while continuing to advance in their careers independently. The two co-wrote the script for a reimagining of “The Lone Ranger,” as well as worked on developing a “King Kong,” television series. Stacy gravitated toward the crime thriller and horror genre with “Let the Devil Wear Black”, based on Shakespear’s “Hamlet,” which she also co-wrote with Jonathan, and the “Snoop Dogg’s Hood of Horror.

“My favorites and greatest genre influences include Kubrick, Cronenberg, Polanski, Von Trier, DePalma and the grandmaster Hitchcock,” Stacy shared in an interview. “There’s an emotionality and brilliance to these filmmakers and their work that transcends even horror. For me, horror works only when it has palpable emotion. Their work lives in character, authenticity and emotional claustrophobia.”

Jonathan continued his work as a writer, producer, and actor, and as a reality contestant on three seasons on the CBS hit series, “Survivor”. Stacy worked as a director, both in television on the Hulu series, “Freakish,” and as a writer on more than 15 pilots for ABC, CBS, NBC, Showtime, WB, CW, AMC, Lifetime, and MTV among others. She also was an activist for screenwriters through the “Voices 4 Action” campaign.

Yet, in spite of her continued success, she faced many challenges as a female writer and director in Hollywood. The most recent “Inclusion in the Director’s Chair” report by researchers at the University of Southern California, included this sober fact: 83 percent of female directors have made just one movie in 11 years.

In an interview for Vulture, Jonathan shared that he had tallied up the days his wife has spent behind the camera during her 25-year career. The number was 99. “That’s four days a year,” he said. “That’s criminal.” 

In the article, Stacy and Jonathan also shared their experiences with the Weinstein Company acquiring the rights to their script, “The Bye Bye Man.” The couple met Bob Weinstein for the first time. They had barely begun talking, when Bob turned to Stacy. “I know this will make you mad, but I prefer to talk to your husband.” For the rest of the meeting, Bob addressed all his comments to Jonathan, and finally said that before they could proceed, Stacy would have to “try out” by shooting a sizzle reel of two scenes. It was a major professional insult, but Stacy, feeling she had no choice, agreed.  

Courtesy of Brian DouglasTHR-StacyTittle-1.jpg
Stacy Title as director on the set of The Bye Bye Man in 2015. Photo courtesy of Brian Douglas

Later, through their attorney, the Weinstein Company stated that, while the script showed a lot of merit, they had concerns about Stacy’s “...relative lack of experience directing,” and would be passing on the project. Luckily, the producer who’d been on the movie since the beginning was able to shift their financing plans to more supportive partners, and in 2015, Stacy shot The Bye Bye Man in a month, with a $7 million budget. The final film featured performances by Doug Jones, Douglas Smith and Carrie-Anne Moss, and was a commercial success, grossing triple its production budget, more than $27 million worldwide to date. In an interview for Movie Times, Stacy shared her perspectives on the story as well as many of the challenges facing women directors.

Photo of Jonathan and Stacy taken two months before her diagnosis. Photo courtesy of Alex Welsh

In August 2017, Stacy was rear-ended in a car accident. Within days, she noticed changes in her walking that seemed unrelated to her injuries. After her speech began to slur, Stacy underwent an exhausting series of tests, and was starting to suspect that the accident might have triggered something in her system. She worried that her symptoms could be related to ALS, as she had lost her maternal grandfather to the fatal, neurodegenerative disease.

Then, in December 2017, her worst fears were confirmed. "Stacy was officially diagnosed with familial ALS (FALS)," said Jonathan. "Frighteningly, around the same time, her mother was diagnosed with frontal-temporal dementia (FTD), another neurodegenerative disease which research has shown can have genetic forms related to ALS."

The disease moved so quickly it robbed Stacy of many physical capabilities in just weeks. She posted the news on Twitter in January 2018, and vowed to continue directing as long as possible. She also expressed her commitment to raise ALS awareness and called on the industry to consider the four pillars of inclusion- sex, race, age, and disability- when hiring.

Stacy at the hospital with long time friend, actor Cary Elwes

“The professional rejection I have battled for 25 years, as a female, pales in comparison to what I now face,” Stacy said. “But I am writing this because I want … to move you to make changes and begin to hire people who look and sound like me.”

Throughout 2018, the progression of the disease advanced at a frightening speed through Stacy’s body.

“By spring, she couldn’t walk, and by summer, she couldn’t talk or swallow,” shared Jonathan. “But Stacy is determined to keep working, and doing what she loves.”

Stacy enjoying the view of the outpouring of love and support

By September 14, 2018, Stacy had decided to have a tracheostomy to begin using a ventilator.  It was their 27th wedding anniversary, and she was not allowed to have flowers inside her hospital room. So Jonathan worked out an alternative solution, by placing flowers in the courtyard outside her window.

He contacted friends and families to join the effort and together they all filled the courtyard with hundreds and hundreds of gorgeous blossoms. The results were so moving that their story was featured by CBS Los Angeles.

 

Many in Hollywood were moved by Stacy’s positive attitude and determination to continue to direct, especially after being diagnosed with ALS. “Any skepticism about whether Stacy can be effective as a director stems from a misunderstanding of the job,” shared director Wash Westmoreland, who co-wrote and co-directed the Oscar Award-winning film, “Still Alice,” with his husband, Richard Glatzer, while Richard battled ALS himself. “Directing doesn’t have to mean barking orders, or wearing jodhpurs and cracking a riding whip. What’s essential is that a director has vision.”

“Sure, Stacy will need to be surrounded by a supportive crew and a bighearted cast,” he continued in an interview with Vulture. “But that’s just part of making any movie — having the right team in place.” 

Through her battle with the disease, Stacy’s dedication to her craft remained as strong as did her commitment to raising awareness about ALS. While using her wheelchair and ventilator, she directed, pro-bono, two public service announcements for The ALS Association, which featured herself and Jonathan as well as reunited her with her friend, actor/producer Courtney B. Vance, who had lost his mother to ALS the same year Stacy was diagnosed. Because she could no longer speak, Stacy used a retina scanning machine to communicate via a laptop and speaker, and used an electronic voice with a British accent.

 

Stacy continued to focus her efforts on filmmaking and storytelling. “My time is precious,” she wrote. “I want to work. I am a director, wheelchair-bound or not.” With Jonathan’s assistance, she made plans to direct one final movie, “Walking Time Bomb”, with Jason Alexander, Bob Odenkirk, and long-time friend Cary Elwes, and her efforts were featured in The Hollywood Reporter. Unfortunately, the movie did not find a funding source, but all involved noted that her “never give up” attitude was remarkable. “To have survived in this business to the point where #MeToo is finally changing things, and now to be hit with this is literally an insult to injury,” Stacy wrote. “And yet, here we are.”

Stacy at home with Yul Kwon in 2019

Stacy’s courage and determination to not let her illness define hard-earned her, earned her industry wide respect and admiration. Jonathan's relationship with CBS led the two to be featured on CBS Cares public service announcement, to help raise awareness to ALS. Their efforts and positive influence inspired Yul Kwon, a friend and fellow competitor of “Survivor,” to share Stacy’s story through his work at Google, as well as return for season 40 of the show and use the platform to raise awareness on TV. "No family should have to endure what Stacy, Jonathan, and their two children have endured, or make the hard choices they've had to make," said Yul. "Please join us in supporting them and the thousands of people who suffer from ALS today—and the many more lives that will be shattered unless we find a cure." CBS helped to promote his commitment, and to maximize the impact of this unprecedented effort, $50,000 in donations were personally matched by Yul. Together, they raised over $250,000 for The ALS Association.

Jonathan and Stacy at the 2019 Los Angeles Walk to Defeat ALS

Stacy and Jonathan continued their efforts to raise awareness and support for the ALS community. They participated in the Golden West Chapter’s Los Angeles Walk to Defeat ALS in 2019. As it became more difficult for Stacy to travel, Jonathan worked to continue her efforts to raise ALS awareness and support.

He had the opportunity to address many ALS advocates at The ALS Association’s annual ALS Advocacy Day and spoke about how families that face ALS have no choice other than to be courageous.

“You don’t find out you are brave until you have something to face bravely.”

Jonathan with others in Golden West Chapter’s delegation at the 2019 ALS Advocacy Day

As a part of the Golden West Chapter’s delegation of ALS advocates, he met directly with legislators to share Stacy’’s moving story and the impact on their family. “The ALS Association does great work building community, and I met some extraordinary people,” Jonathan shared.

“I admit, the process for asking for support from our elected officials was a sobering one. As a family member and primary caregiver of a person who was fighting the disease, it was hard to make incremental requests for support when the need and urgency for more help, faster was so clear."

“Slowly, steadily they’ve moved forward, but I always wanted to ask for more! It was an eye opening experience with incredible families and individuals from around the country. These are true heroes and I’m so glad I could be there."

Jonathan and the couple's two children worked together to make sure Stacy continued to live her life to the fullest. Cooper and Ellis moved home, and the whole family organized disco birthday parties and anniversary parties and outings to Disney Hall. And there were always movies to watch together.  Stacy required 24-hour care, and as her primary caretakers, they worked together to handle her every need whether it was dressing, bathing, moving, helping her to the bathroom, even placing a towel in her mouth every few minutes to absorb saliva. On May 18, 2019, the couple renewed their wedding vows before their 28th anniversary, surrounded by an outpouring of and support from longtime family and friends.

vows.png
Stacy and Jonathan at their vow renewal ceremony for their 28th anniversary, surrounded by family and friends near their home in the hollywood hills
Jonathan caring for Stacy on their last vacation together for their 29th wedding anniversary

Throughout 2020, the family kept on as best they could, but COVID-19 protocols were difficult. Stacy missed being touched by her friends, although many still came to visit in a distanced way, outside in the open air. By the fall, wildfires were prevalent in California and smoke hung heavily, making going outside impossible for Stacy and her eyes were always dry. 

For their 29th wedding anniversary in September, friends and loved ones sent videos of themselves and Stacy and Jonathan took one final vacation. Stacy had suggested Paris, her favorite city, but instead they went to Santa Monica. The weekend was perfect. Jonathan rolled Stacy’s wheelchair down the pier. He helped her get in the swimming pool, and, given her love of margaritas, he put some salt and a few tequila-flavored drops on her tongue. 

By December, every adult in the family, but Stacy, tested positive for COVID-19. A doctor recommended that she go to the hospital, but ultimately, they decided to keep Stacy at home as she had made it clear that was where she wanted to be. Additional nurses stepped in to care for her while Jonathan and the kids kept their distance, in quarantine. Sometimes Jonathan had to bellow down the corridor the books he was reading out loud to help keep his wife company. As the New Year approached, Stacy participated in a Zoom high school reunion. More than watching movies, in her final weeks, she preferred to be read to as she was losing her sight. Stacy died from ALS peacefully on January 11, 2021 after a more than three year battle with the disease. 

Stacy Title will be remembered for her humor, strength, and courage, along with her efforts to raise awareness and funds to benefit the ALS community. Even though she lost her ability to speak, Stacy raised her voice to help other women in the industry as well as those facing illness or disability.

“Oddly, I became a better director since having ALS,” Stacy once shared at an event for the Motion Picture Television Fund (MPTF).  “My illness has actually made my powers of observation stronger, giving me the ability to read people in a truer way.”

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“I still think, I still feel, and I am still in here. Life with ALS is still life. I can't laugh anymore, but I still find things funny. Sadness and joy still bring tears to my eyes. I see Jonathan in new ways with these newly honed powers of observation. Even after 30 years of looking at the man, he still just takes my breath away.”

“I'm a director. I like to tell stories and paint pictures and I refuse to say ‘fade out’. There is too much still to do. Instead, I'll just move on to the next scene, to the next problem to solve, to the next miracle.”

Our hearts go out to her family and loved ones. And deepest thanks to Amy Wallace at Vulture for her moving articles chronicling the family’s final days together. We are grateful to Stacy and Jonathan for their many efforts to ensure improved access to care and to accelerate the search for treatments and cures for ALS; for those living with the disease today and those who will be diagnosed tomorrow.