Diane Rutledge passed away from complications related to ALS on February 3, 2026. The story that follows is based on an interview with Diane that took place in January with the help of the assistive communication technologies mentioned below.
In Springfield, Illinois, Diane Rutledge has long been a familiar name—connected to schools, community boards and volunteer work through decades of steady, thoughtful stewardship. She built her career in the same district where she was raised, eventually serving as school superintendent, and becoming known for a style of leadership rooted in service and care.
Until recently, Diane’s days moved at a pace that reflected her full life and wide circle of responsibilities. Mornings started with movement and connection: “Until this year, my days started with a walk or work out with my best friend, Kay, followed by work,” she says. Work often meant developing and presenting content in leadership settings, followed by evenings filled with community meetings and events—an ongoing cycle of planning, participation, and service.
Diane’s impact on Springfield has never been limited to a job title. Recently, she received the First Citizen Award, an honor that gave her space to reflect on what she has built—and what others have carried forward because of her leadership. “The recent award gave an opportunity for reflection and hearing from former students, parents, staff, and community,” she says. “I heard a lot about kind leadership and I like that thought.”
Behind the public version of Diane—the one people recognize at meetings, events, and school functions—there has always been a foundation of help at home. “Others don’t see the support of my husband, who has always been so supportive and never complained of my time away,” she says.
Then subtle changes began to interrupt that rhythm.
“My initial indication was a twitch in my lip while weight lifting and increasing impaired speech,” Diane says.
What followed was a long and often frustrating path to answers. Diane sought help through provider after provider, hoping each appointment might bring clarity. Instead, she faced uncertainty, dead ends, and the exhausting experience of knowing something was wrong while the evidence remained difficult to find. “I exhausted local healthcare providers. I went to primary care, a dentist, an optometrist, an ENT, a cardiologist, and a neurologist,” she says.
Like many people who later receive an ALS diagnosis, Diane encountered barriers even when she pursued additional specialty care. She describes trying referrals that didn’t lead anywhere, and facing insurance limitations that closed off options. Ultimately, she made it to the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine, where she finally received the diagnosis that brought an explanation—while opening the door to a new, difficult chapter. “Ultimately got to the great team at Northwestern and was diagnosed by Dr. Brent in April of 2024,” she says.
In the beginning, Diane’s care team advised a careful approach to sharing the news. She first told people she was being treated for a neuromuscular disease, and only later, when she felt ready, became more direct with family and close friends. Even then, she found herself needing a way to communicate clearly and consistently without having to relive the same conversation over and over again.
“I wrote a descriptive paragraph that described my status, what to expect, and what I needed,” she says. “I used that for work, community, and social activities and it was effective.”
For someone who spent decades helping others, one of the hardest adjustments has been learning to accept help herself. The shift has been practical, emotional, and deeply personal—especially as everyday tasks become more challenging, and as her husband takes on more caregiving responsibilities.
“Asking for help is new, but necessary,” Diane says.
Even so, she has been met with extraordinary kindness—support that has shown up through small gestures and meaningful acts of care. She remembers one moment that made her feel especially loved and seen: friends decorating the Christmas tree for a recent birthday celebration. It wasn’t a grand production. It was simply people showing up, doing what needed to be done, and making sure Diane could still be part of the season in the way she always had been.
ALS has changed Diane’s speech, but it has not silenced her presence in the community. With help from her Support Services Coordinator at Les Turner, Rochelle Walwer, assistive communication tools have helped Diane remain engaged in work, relationships, and public life.
“The good people of Les Turner, Bridging Voice, and Eleven Labs saved my life in terms of communication!” Diane says.
By using recordings from previous speeches, an AI-generated voice was created that sounds like her—allowing Diane to communicate through an app on her phone. It has helped her stay involved in meetings, continue professional engagement, and maintain her connection to the people and places that have always mattered to her.
For Diane, living with ALS has meant learning to navigate new challenges that can change from day to day. It has required constant adaptation, and a different kind of endurance than the kind she practiced in her career. But it has also revealed something powerful: the depth of care that exists in a community when someone is willing to keep showing up, even in a new way.
“I’ve learned ALS is a disease of effects,” Diane says. “The side effects of lack of speech, or head drop or mouth environment make it an ever-changing challenge.”
And yet, she doesn’t tell her story without naming the kindness that has surrounded her. Even as ALS makes more things difficult, she has found that support—practical, emotional, and communal—can make life feel more manageable and more human.
Looking ahead, Diane is still working to understand what she can and cannot do, while holding onto what has always mattered: staying connected, staying involved, and continuing to be herself.
“I’m trying to figure out what I can and cannot do while still staying connected and involved,” she says. “To date I’ve still actively participated in almost everything I did before, but it’s changing.”
There is no pretending this is easy. ALS has made everyday life harder. But Diane continues to move forward with the same values that shaped her leadership from the beginning: commitment, compassion, and the belief that community is something you build—and something that, when the time comes, can also carry you.
