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For Cory Mosley, learning he had ALS was more than a diagnosis, it was the continuation of a family legacy. But as he faces ALS, Cory has something that others in his family did not have years ago: hope.

It started with things that might go unnoticed for many of us—a twinge, a cramp, a twitch of the toes. For Cory, these were signals of something scary. Growing up, he had witnessed firsthand the devastating impact of SOD1-ALS on his loved ones, including his mother, who passed away seven years ago. “We’ve had 39 members of my family in three generations diagnosed with ALS,” Cory said. “Growing up, I watched several members of my family going through ALS.”

Growing up with so many family members facing ALS, Cory was struck by how little the disease was talked about, with the feeling being that there was nothing that could be done about it. “I decided I’m going to go kind of a different route,” Cory said. “I really want to make sure we talk about it and get some of the treatments we’re able to be on in front of other family members so they understand that it’s not as bad as it used to be. We have some options that several years ago we didn’t have.”

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The most significant of those options is Qalsody^®, a recently FDA-approved treatment specifically for people with SOD1-ALS. Cory began taking the treatment in February 2024 and has already seen promising results. “It’s hope,” he said. “It means hope to the folks with SOD1. Up until recently, there was no real way to do anything about it. So, you just kind of go through life wondering when it’s going to hit. But now it feels a little different. There’s some treatment that is showing promise, that’s working for me. It’s working for other members of my family.”

For Cory, hope means time. Time to see his seven-year-old daughter, Willa, grow up. “Our family version of ALS, we tend to have about eight to 15 years,” he explains. “And I’m a worst-case-scenario person, so I took that to mean eight years. One of the more emotional moments since I’ve been diagnosed was doing the math on how much time I have left with my daughter. She was six at the time. So, thinking that I may not see her graduate high school, that was kind of upsetting. But then being able to get on treatments hopefully can slow the progression of it.” 

A project manager by trade who believes planning is important for everyone, Cory hopes that everyone with a family history of ALS will take part in genetic testing, not only for their own benefit, but for the benefit of the entire ALS community. “If you don’t go get tested and you don’t know you have the gene, how are you going to plan correctly for your life in general?” he said. “The doctors aren’t going to have the ability to make good decisions about the drugs they’re putting out if we don’t get on them and give them the data points to show the research is legitimate.”

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Reflecting on his mother’s battle with ALS, as well as others from his family, Cory sees the change in perspective that progress has brought about. “(My mom) had no treatment. No hope,” he says. “Now, I’m here with reduced NfL (neurofilament light chain) levels and the potential for more time. That’s not just progress—it’s a new lease on life.”

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There is still much to be done to make ALS livable for everyone, everywhere, until we can cure it. But because of the hard work of care providers, caregivers, researchers, and advocates, there is now hope for many; hope for more treatments, more care, more time.

“To be able to extend that timeline, spend time with my family, my wife, my daughter—it means everything,” Cory said. 

Help us continue to provide hope to families like Cory’s by supporting crucial research and expanded treatment options for people living with ALS. 

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