Genetics, Community, and ALS: Anne Moffett of Eugene, Oregon

Photo: Anne Moffett with Bill Hankins, a person who lives with ALS in Eugene, Oregon, and Mary Rebar, an ALS Northwest Care Services Coordinator.

Oftentimes, with a rare disease like ALS, people feel isolated. They’re caught in a reality that most others don’t fully understand, and a sense that the world keeps moving while their own narrows. ALS brings with it a kind of premature grief — for what’s been lost, what’s coming, and what may never be. 

Yet, within that isolation, there can also be a community. At ALS Northwest support groups, Anne Moffett has often heard the same words offered to newcomers: we hate that you had to join this community, but we’re here for you. You’re not alone. It’s a sentiment she now carries herself and one that reflects both heartbreak and the deep compassion that defines the ALS community. 

Anne’s connection to ALS 

Anne resides in Eugene, Oregon. While she doesn’t live with ALS herself, her involvement with ALS Northwest isn’t random. It’s personal and generational. Her family’s story with ALS and dementia stretches across decades. Her mother’s younger sister was diagnosed with ALS in her 60s. Her mother herself battled breast cancer and later developed dementia. Her mother’s older sister also experienced dementia, and that aunt’s son — Anne’s cousin — was diagnosed with both dementia and ALS. With such clear patterns, they started to have questions.  

Through specialists at Wake Forest University, a private research institute in North Carolina, Anne and her extended family came to understand that the C9ORF72 gene – often referred to as just C9 – was present in their family line. This gene can lead to both ALS and dementia, and its presence carries not just medical implications, but emotional ones that ripple through generations.

At the time, Anne was living on the West Coast, far from most of her family in North Carolina, Georgia and Texas. Distance made everything more complicated — the worry, the caregiving, and the sense of wanting to help but not always being able to. It also deepened her need to understand ALS and the C9 gene. 

Testing for ALS 

Genetic testing wasn’t a simple decision. Barriers like lack of insurance coverage, the emotional weight of knowing, and broader concerns about healthcare access made it a tough choice, but ultimately, Anne sought answers. With guidance from a genetic counselor and resources from ALS Northwest, she eventually chose to be tested. Her result: she did not carry the C9 gene. 

There was relief in the moment, but it wasn’t that simple. Others in her extended family, including cousins, tested positive for the gene. The knowledge didn’t separate her from the experience; in fact, it tied her to it in a different way. She had seen how this gene moved through generations in her family. It brought her a sharper understanding that certainty is fragile and preparation matters. 

Involvement with the ALS community 

When Anne connected with her local ALS community in Oregon in 2015, meeting an ALS Northwest social worker and attending her first support group, she gained information and a better understanding of ALS. 

It was in these spaces that she saw what living with ALS truly looks like: not just the diagnosis, but the day-to-day realities, the caregiving, the resilience, and the relationships that form in the face of a progressive disease. Being far from her own family, these groups became a place where she could both learn and belong. 

Over time, Anne became a steady presence in the Willamette Valley ALS community. She is the kind of person who remembers names, follows up on conversations from weeks before, and doesn’t shy away from the hard truths of ALS but instead, meets them with honesty and care. She understands the weight people carry when they walk into those rooms, and she makes sure they don’t feel alone. 

“I want to be of service,” she said. “If it’s something where I can be helpful, that’s what I want to do.” 

Her involvement is not driven by obligation. It’s driven by empathy and having witnessed, repeatedly, what this disease takes from individuals and families. 

She knows how difficult it is to navigate testing, especially in rural or underserved areas. She knows how complicated healthcare systems can be. She knows the emotional toll of uncertainty, and the quiet courage it takes to keep moving forward anyway. Most of all, she knows the difference that support makes. 

ALS Northwest exists because of people like Anne and her family. Every resource, from home visits and loaned medical equipment to research efforts, exists for a reason: to make an unbearable journey just a little more navigable. 

Anne has seen what happens when those resources are available, and when they’re not. She has seen how awareness, advocacy, and community can change the experience of ALS, even when they cannot change the outcome. 

There are many reasons people choose to get involved. For Anne, it comes down to this: her family, her experiences, and her belief in showing up for others. 

No one should have to face ALS alone, and ALS Northwest is there to make sure no one has to.