When Doug Butchart’s wife, Shadene, first mentioned she couldn’t turn the key in her car’s ignition, he didn’t think much of it. But that small moment in 2017 was the first sign of a life-changing diagnosis. After an initial visit to her doctor and referrals to a neurologist, the possibility of ALS was raised immediately. A second opinion at Rush Medical Center, along with an EMG, confirmed the diagnosis.

The years that followed brought both medical challenges and logistical ones. Over 7.5 years, Shadene has been seen by numerous neurologists and at several multidisciplinary ALS clinics—not because they moved, but because insurance changes and clinic closures kept forcing transitions. Twice, ALS clinics closed simply because they weren’t profitable.

Finding Access Through EAPs

Through persistence and connection with the ALS community,  Illinois residents Doug and Shadene found opportunities to participate in Expanded Access Programs (EAPs). The first was Relyvrio, which she began at Northwestern University before its FDA approval. After it was pulled from the market, Doug asked her neurologist about other options. That’s when she was enrolled in an EAP for CNM-Au8, a nanomedicine oral suspension developed by Clene.

Every morning, Shadene drinks her 60ml dose straight from the bottle using a straw—an easier, safer drinking option since her hand function is limited. While the medication hasn’t reversed her symptoms, Doug understands that’s not the goal. “These drugs are meant to slow progression,” he says. “Everyone’s ALS is different. Just because it doesn’t work for one person doesn’t mean it won’t for another.”

Life Today

Shadene’s progression has been relatively slow compared to others Doug has met in support groups. She can still speak, feed herself, and walk short distances, though she primarily uses a wheelchair. Once a nanny for 30 years, she worked for about a year after her diagnosis before losing the fine motor skills needed for childcare tasks.

Doug, a retired auto mechanic, is her primary caregiver. They don’t qualify for Medicare, Medicaid, or SSDI, so the costs of care are either out-of-pocket or covered through charitable foundations. “It’s a full-time job just trying to resource what we need,” Doug says. Occasional help from caregiving services offers short breaks, but not enough to truly rest.

Why EAPs Matter

Doug is clear about the broader value of programs like CNM-Au8. “The money spent on EAPs isn’t just helping ALS patients—it’s helping everyone with neurological conditions,” he says. “Having an opportunity to take a drug is better than nothing. If you don’t do something, nothing will happen.”

He believes access should be available to those who have “timed out” of clinical trial eligibility just as much as to newly diagnosed patients. “It’s not going to be one drug that cures ALS—it’s going to take many approaches.”

Adapting Every Day

For Doug and Shadene, life with ALS is a constant process of adjustment. “Every day is a new thing,” Doug says. “You just roll with it.” Despite the challenges, they remain active in the ALS community. Doug attends support groups, participates on the I AM ALS legislative team, and continues to advocate for the caregiving resources families desperately need.

His message to lawmakers is simple: “Remember that people with ALS come first, before everything else.”