Personal stories have an extraordinary ability to connect, inspire, and empower all of us. And for those impacted by ALS, sharing personal experiences can be more than just a form of expression—it’s a way to foster understanding, build community, and drive meaningful change.
Sharing stories within the ALS community is particularly powerful because it humanizes a disease known to many only by its name. So, it’s through heartfelt stories that others can truly grasp the resilience, triumphs, and heartaches behind each diagnosis, because no two are ever alike.
Whether you're living with ALS, a caregiver, or a loved one, your story holds the potential to illuminate the realities of this disease, break down misconceptions, and offer a sense of solidarity to others navigating similar day-to-day challenges.
Whether shared through a blog, social media post, or from a community event, your story can create ripples of hope and change, proving that no one has to face this journey alone.
Here are just a few of the stories we’ve been so grateful to share with the community this past year:
Sara is a young mother of two and a retired teacher and professional organizer. She has late-stage ALS and while she says she is mostly nonverbal, she still has her voice. “My new love languages are stretching my fingers, rubbing my legs and feet, scratching my head, and dog/kid snuggles,” she shared.
Atticus shared his story about his father Stephen who was diagnosed this past year. “Since his diagnosis, I've been committed to helping him in however way I can — and though I'm studying internationally in New Zealand, having a balance between studying and being back home for my dad & my stepmom, my dad's primary caregivers, is more important than ever. I am committed to finding a cure for him, and the steps that I've taken so far, such as the Ice Bucket Challenge and spreading awareness to my friends through social media, are how I advocate for that cure to become a reality.”
For Cory, 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, all of which were signals of something scary for him. Growing up, he had witnessed firsthand the devastating impact of SOD1-ALS on his loved ones, 39 in total, including his mother, who passed away seven years ago.
“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.”
Alexie’s father was diagnosed with ALS in his mid-30’s when she was in the 6th grade. By the 10th grade she admits she took on the role of his nightly caregiver, putting her own life aside to ensure he was getting the best care from someone who loved him most. “When I finally graduated high school, I became his full-time caregiver. I watched my dad blossom in more ways than ever: he became a comedian; he hosted his own golf tournament every year to help with his bills throughout the year! Just because he lost his ability he never meant, he never lost his abilities to stop living and being the most outstanding father a girl could ever ask for!”
Araceli’s husband was diagnosed with ALS just 5 months into their marriage. “I hadn’t even adjusted to married life yet or even changed my legal name,” she said. “I honestly will say I didn’t accept that my husband had this terrible illness till about 6 months ago.”
Our new life is very much always a constant change with so many challenges. Along the way I learned that it’s okay to express what I need, even if it makes no sense to others. Yes, I’m battling depression and recognizing it, and getting help has made me an even better caregiver.”
Joyce was diagnosed with ALS in July 2016 “after two years of having tests run, MRIs, and EMG,” she shared. “My progression has been slow, thank God, and I am very grateful for that. I walk with a walker and have AFOs on both feet.” She also stressed, “I’m very blessed to have a family that were taught to take care of each other. I get very emotional when I think about how much my family has to do daily to help me live with ALS.”
Cliff Eby became a caregiver to his daughter Brooke who was diagnosed with ALS at the age of just 33. As he humbly puts it, "I’m really a co-caregiver, maybe even a one-third caregiver." He admits his wife Ginny plays a major role, focusing on the emotional side of Brooke’s care, while he takes a more practical, problem-solving approach. Their caregiving team also includes an assistant who helps out three times a week, showing that ALS caregiving is very much a team sport.
"Caregivers are so important in the life of someone with ALS," Cliff says, reflecting on the essential support he and his family provide to Brooke. "With ALS, you just never know when the next challenge will come. That’s why you need multiple caregivers—it’s an unpredictable disease." For the Eby family, flexibility and a willingness to adapt have been crucial in navigating her changing needs.
Matthew shared his personal story about how he is helping defeat ALS “in honor of my dad—my best friend, my boss, and my hero, Dennis.” “On June 8th, 2024, my world changed when I received the devastating news of his diagnosis with ALS. That day, our family and everyone who knows my father felt the weight of this heartbreaking reality. My father is the hardest working, most fun-loving, and caring person you could ever meet. To call this diagnosis unfair would be an understatement.”
“Despite the challenges, my dad continues to fight with remarkable strength, and in this fight, we’ve witnessed the incredible outpouring of love and support from friends and family. His lifetime of kindness and generosity is coming back to him now, and he is surrounded by those who care deeply for him,” he shared.
If you’re considering sharing your own story, know that your voice matters. Sharing your journey can help provide comfort to someone feeling isolated, inspire ALS advocacy, and even influence research efforts by highlighting the needs and hopes of the ALS community.
You can read their stories and many others like them here and share yours TODAY!
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Comments
Hello there!
I’m Divaldo Souza and I have been diagnosed with ALS In April 2024 at USF Tampa FL. I had to move back to Brazil, after 30 years because of the delay of my SS disability benefits and now I’m receiving U$1630 plus Medicare B.
What I see there is a lot of people with this disease is having a better life because of the treatments, which is slowing down the progression. I wish I could get back there.
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