The Family That Jenifer Built
There are families formed by blood, and there are families formed by shared purpose. Project ALS was built by the latter. This season, the story belongs to Sue Leibman, Martha McCully, and Rob Morrow — friends of Jenifer Estess who became part of her life through art and stayed through illness, action, and legacy. Long after Jenifer’s death, they remain part of the Project ALS family, carrying her voice forward in different ways, but with the same devotion.
They all met Jenifer before she was diagnosed with ALS, before she ever experienced a single symptom. Before hospitals and ventilators. Before research pipelines and clinical trials. The place was New York City, and the time was the late 1980s, when a generation of artists was building something new together.
Sue remembers that energy clearly. “Jenifer was so personable, creative, and super smart, and had enormous energy. You wanted to hang around her.” They worked together, partied together, and moved through the same creative circles. Specifically Naked Angels, a community of writers, directors, actors, producers, and designers, geared towards expression, experimentation, and production.
Martha met Jenifer around the same time. “It was 1986. We were all young and fresh and hopeful.” Through Naked Angels, Martha found herself pulled into a new world, one shaped by collaboration and ambition. Jenifer wasn’t just part of that world. She was helping to build it.
Rob remembers it as a kind of creative crossroads. “Pretty much anyone who was 20 to 35 and in New York show business at that time came through the doors.” Naked Angels became a home for artists who wanted autonomy, who wanted to create something together. Jenifer arrived as an actress, but it quickly became clear where her strengths lay. “She wasn’t afraid to organize. She became a producer. She became a leader.”
That leadership revealed itself most starkly when ALS entered her life.
Sue remembers the moment Jenifer told her about the diagnosis. “I recall being in my office, my mouth kind of dropped. I was stunned that such a young, vibrant woman was going through this.” Like many people at the time, Sue didn’t know much about ALS. “She explained it to me as she was experiencing it.” Jenifer didn’t soften the truth. She spoke plainly, even as she was still processing it herself.
Martha’s memory is equally vivid and devastating. She recalls being in Los Angeles with Jenifer when the symptoms became impossible to ignore. “She kept saying her hands were not working properly. I didn’t listen fully.” Back in New York, after countless doctors, one moment clarified everything. “The doctor told her to sit on the floor. Then get up. She couldn’t.” When Jenifer called Martha afterward, Martha says, “I was sitting on my couch on East 71st Street. I remember that conversation so well. I often picture her on that carpet, trying to get up. It breaks my heart.”
There was another conversation Martha has never forgotten. “Jenifer had to tell me that I was not getting it. She had ALS and there was no cure.” Martha admits she had been trying to be optimistic, suggesting remedies, refusing to accept reality. “She was an amazing friend to tell me to wake up.” This tender yet hard moment, reshaped her understanding of empathy, of which she takes with her throughout life even after her friend’s passing. “Whenever a friend is going through something hard, I don’t deny it. I listen.”
Rob describes the diagnosis as a line in his life. “She was probably the first person my age I knew facing a terminal illness. There was a very clear before and after.” Shock turned quickly into presence. Rob lived down the street, and he was there often. “We brought our kids. Everyone brought their kids. She loved having people around.”
As ALS progressed, Jenifer’s apartment on West 12th Street became something extraordinary. “Even though she was essentially bedridden, that apartment just emanated light.” Rob remembers love filling the room: laughter, children, and meals cooked by friends. “You get what you give,” he says. “And she gave so much.”
Sue saw that same intensity transform into action. Jenifer asked her to meet at Gracie Mansion with her sisters and a small group of supporters. “At that lunch, Jenifer asked me to be on the Board of Directors of Project ALS.” Sue didn’t hesitate. “I was honored, saddened for the reason why, and said yes in a second.” From that moment on, Project ALS became a family.
Jenifer didn’t lead from a distance. Sue remembers her bedroom becoming headquarters. “Jenifer sitting propped up with her BiPAP on, having tons of meetings in the bedroom.” Through this tight knit community and determination, money started being raised. “We dialed for dollars all through the night.” Even as the disease grew more consuming, Sue says, “It never stopped her will, her focus, nor her purpose.”
Rob remembers the moment everything shifted. “When the doctors told her to max out her credit cards, that was the turning point.” No one was offering solutions, just acceptance. Jenifer refused. “She decided to raise funds and awareness to find a cure.” Rob describes it as lightning. “Once momentum built, everyone said yes.”
Martha watched Jenifer inspire by example. “She took so much on herself that it inspired others to do the same.” Martha asked for things she never would have before. “I asked organizations and brands for things that were out of my comfort zone. And the answers were yes.”
That spirit carried into everything. Sue recalls co-producing the television movie Jenifer with her dear friend. “Rules were not acceptable to her.” When Canadian union restrictions limited American actors, Jenifer called the president of ACTRA directly. “She talked her way in.” Sue laughs remembering it. “Charm and strong-arm combined.”
Rob sees the throughline clearly. “She didn’t take no for an answer. That’s what you want in a leader.” He credits her belief in him with shaping his career. “Part of my success came from her relentless belief in me.”
As Project ALS grew, so did its impact. Sue remembers the early benefits. “Jenifer called upon every single actor, artist, agent, and executive.” The money raised fueled research. “The research milestones stemming from those benefits are the center of what Project ALS does.”
Martha remembers the events as deeply emotional. “They were tearful, heartfelt, and truly showed what a determined group of people can do.” But she also emphasizes the quiet supporters. “The non-celebrities, the friends who come to every event, the people who devote their time and money. That’s what keeps it going.”
Rob speaks about the organization today with awe. “I’m never not amazed by what this organization has accomplished with such a lean infrastructure.” He sees Jenifer’s vision everywhere. “Spend money on research, not overhead. That was her idea.”
Decades later, all three remain connected to Project ALS, not out of obligation, but a familial love.
Sue says, “being on the Board from day one makes me feel like we are honoring Jenifer’s wishes.” Martha adds, “It’s incredibly rewarding to be part of something that is persistent and consistent, that doesn’t give up.” Rob puts it simply. “I feel like I’m one of Jen’s representatives. Until they don’t want me, I’m there for her.”
They all speak about Valerie and Meredith Estess with deep respect. Rob reflects on watching them grow into leaders. “They rose to the occasion the way people do when love demands it.” Sue calls their commitment extraordinary. Martha says the mission has never drifted. “The inspiration and the idea have always stayed true to Jenifer.”
This season, their stories remind us what Project ALS truly is. Not just an organization. A family built from belief, action, and refusal to accept the impossible.
“If there’s any sense of life after death,” Rob says, “Jenifer is absolutely smiling.” She would be proud. She would also be pushing. And when meaningful treatments arrive, when families no longer have to endure what she did, there will be a celebration.
Until then, the family she built carries on, together.
