From the Community: An Everyday Story of Inspiration

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Sharing your personal journey with ALS—whether as a person living with ALS, a caregiver, or an advocate—has the power to educate others, inspire hope, and remind those facing similar challenges that they are not alone.

Over the last year, many of you have
shared your personal stories with us and allowed us to share them with the rest of the ALS community. Some have been short, some long, but all have moved us in some way and have played an important role in raising awareness and mobilizing policymakers to support funding to find new treatments and help to improve the lives of people living with ALS.

One story recently shared with us came from Sandy, who told us about her cousin Debbie who is living with ALS. We reached out to learn more: 

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Sandy remembers her older cousin Debbie being one of the popular kids growing up. One of those kids who everyone just seemed to like. “She was always my idol growing up,” Sandy said. “She was a cheerleader, and when I was little, I wanted to be just like her.”

Even after they had grown up, Sandy and Debbie remained close. Debbie went on to have a career working in a dental office, but she remained a “people person” who always had a smile for everyone she met.

About 13 years ago, Debbie started to notice muscle spasms and difficulty holding things. Eventually, she received the news no one wanted to hear: she had ALS. “Once diagnosed, she called me and was very, very upset of course,” Sandy said. “That upset me too. We have pretty much stuck together through all of it.”

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We are so blessed to still have Debbie after all this time, even though she suffers a lot, you would not know it to talk to her.”

Sandy lives about an hour away from Debbie and makes it a point to help out her cousin as much as possible. While her ALS has been slow progressing, Debbie needs help eating and moving around. Still, she has kept a positive outlook. “She’s mostly always upbeat and constantly trying to make others happy,” Sandy said.

Debbie shares her inspirational message with others not just in person, but also daily on social media. “Perhaps our purpose here on earth is not grand accomplishment, but a small kindness that we don’t think much of that changes the life of another. Every action and interaction in your life has meaning. You never know how a small act of love can make someone’s day,” she posted recently.

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And even though traveling for her is difficult, Debbie remains committed to raising awareness, and funds, through the Walk to Defeat ALS®. “She currently can’t make it to Columbus (Ohio) for the Walk, so to make up for that and to keep supporting ALS, she has a walk of her own in her little hometown of Oak Hill,” Sandy said. “We have anywhere from 25 to 40 people that walk with us every year in her honor and she so far has been able to walk every year.”

Every person living with ALS has a story. To Sandy, Debbie’s story continues to show her how to live a life of kindness and meaning even while facing challenges. “When we were little, I idolized her for other reasons. Here we are, MANY years later, and she’s still my idol,” Sandy said. “She’s always loving, kind and caring to anyone she meets and always a smile on her face. I hope this inspires all of you as much as she inspires me.” 

Learn more about how you can get involved in the fight against ALS and find a Walk To Defeat ALS event near you HERE.

You can read more stories from people like Sandy and Debbie
here and share yours TODAY!

To continue to follow stories about people living with ALS in the community and learn more about the disease, subscribe to receive our weekly blogs in your inbox 
HERE or follow us at als.org/blog.

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