Jeff Yates, a professor at the University of Albany, is living with ALS, a diagnosis that came crashing into his and his family’s life in 2022. For this once very physically active man, the reality of ALS is not only a personal struggle but a journey shared with his daughter Ashley, who, at 24, has taken on the role of his primary caregiver. Living together in Albany, New York, the two now navigate each day under the weight of this unforgiving disease, finding both sorrow and small victories in their time together.
The Unexpected ALS Diagnosis: A Life-Altering Moment
The journey began with troubling signs. Ashley recalls that her father “started developing symptoms in late 2021,” noticing an unusual weakness in his legs that led to falls. When his wife, Ashley’s mother, passed in early 2023, ALS truly hit home. “It was like a punch to the stomach,” Ashley shares. “My head was filled with so many questions.” In the quiet hours of the night, she would fall down internet rabbit holes, desperately searching for answers and resources that might offer hope for her dad’s future. But, as Ashley soon realized, ALS is a complex disease that overwhelms even the most advanced medical minds. “After going to many clinical trials and doctor’s appointments, it felt overwhelming and impossible that any effective treatments would come,” she admits.
For Ashley, caregiving is now woven into the fabric of her everyday life, a silent but steadfast routine that supports her dad’s independence while shouldering the profound emotional toll of ALS. “Before leaving for work, I set up breakfast and coffee for my dad,” she explains, adding, “I check his electric scooter and help him get it ready to go teach coding at UAlbany.” Watching her father modify his teaching schedule to accommodate his deteriorating mobility has been painful. “At first it worked well, but now with the rapid deterioration of his legs, it’s becoming harder to go in person to teach.” On teaching days, she assists him with whatever he needs, making sure he can still engage in his profession, even as ALS chips away at his physical capabilities.
The most painful moments, however, are not the physical demands but the emotional strain. “The hardest thing,” Ashley shares, “is seeing your parent struggle and there not being something you can do besides struggle with them.” For Jeff, an active lifestyle was central to his identity, and the physical limitations brought on by ALS have forced him to redefine how he spends his time. “Activity was the center of my life,” he confesses. “Now it’s not. It’s hard to fill that time, so I mostly fill it with work.”
Despite these challenges, Ashley has found moments of strength in their shared journey. She finds hope in her father’s resilience, his strength showing through in unexpected ways. “During his clinical trial appointments, he amazes us all with how he pushes himself and is still so strong in his upper body,” she notes. This determination fuels her to be his unwavering support and advocate.
The Challenges of ALS Research and Advocacy
For Jeff and Ashley, ALS is more than a personal battle, it has opened their eyes to the complex and often frustrating world of ALS research. Jeff shares the disappointment he feels with the current research landscape, describing the need for coordination between organizations, which only seems to impede progress. “There’s so much siloed information,” he says. “I keep giving the same biofluids and answering the same questions to different organizations; nobody seems to be working together.” This repetitive, disconnected approach has left him feeling isolated, a sentiment Ashley echoes as she calls for “more out-of-the-box research,” emphasizing her hope for a shift toward unity and innovation.
At Ҵý, we empathize deeply with these frustrations and share the urgency to remove these barriers. We’ve made it an integral part of our strategy and mission to not be limited by traditional research silos. We foster collaboration across disciplines and connect experts from around the world, united by the belief that breakthroughs happen when we work together. This approach has already led to the development of multiple clinical trials and has helped launch biotech companies dedicated to finding effective ALS treatments.
To further support researchers and provide hope to those living with ALS and their families, we developed the Ҵý Data Engine, a resource accessible to scientists internationally, with zero intellectual property restrictions. By offering open access to valuable ALS data, we aim to accelerate the pace of innovation and discovery, transforming isolated research efforts into unified progress.
For Jeff and Ashley, a coordinated approach to ALS research represents hope, the hope that every biomarker, every data point, and every insight can help build a world where everyone with ALS lives. At Ҵý, we’re committed to making that hope a reality, standing alongside Jeff, Ashley, and every family impacted by ALS as we work to drive breakthroughs together.
Their shared journey has brought Jeff and Ashley closer, forging a deep bond amidst the challenges and uncertainty they face. For Ashley, who was once closer to her mother, this experience has created new layers to her relationship with her dad. “This experience has brought us closer together,” she reflects. Jeff, meanwhile, doesn’t focus on big bucket-list goals or grand plans. Instead, he finds solace in the steady support of his family, which has become a source of strength as he navigates each day. “Given that I have such limitations now, I’m not looking to go travel the world or do bucket list kinds of things,” he says. “I’m just trying to go day by day and try to be as normal as possible… Family support has been a huge sense of joy.”
Through it all, Ashley remains steadfast in her mission to raise awareness for ALS. “I wanted to share my story to be one more voice advocating for more light on this disease and more research going into finding effective treatments,” she says. Her advice to other caregivers mirrors her own journey: “Give yourself grace. You are doing great, even if it may not feel like it. Keep the fight going because we will win against ALS.”
And for Jeff, each day is a reminder of the unpredictability of life with ALS. He advises others to learn all they can but to avoid letting the disease define their lives. “If there was a magic silver bullet, everyone would have access to it, but there is not,” he says candidly. As he moves forward, Jeff hopes that others will be spared the difficult road he travels. “I hope no family or friends ever have to go through this. I wouldn’t even wish this on an enemy.”
Lessons of Hope and Courage While Navigating ALS
Their story is a call to action, a reminder that ALS is not just a personal battle but a fight shared by caregivers, families, and those tirelessly working toward finding effective treatments that make this a liveable and manageable disease. For Jeff and Ashley, the path forward is uncertain, but their shared strength, hope, and resilience remain unbreakable. Together, they continue their fight, holding on to each other, facing ALS with courage, and advocating for the change that could one day bring relief to countless others.
