In recognition of National Volunteer Month, we are shining a spotlight on some of our amazing, dedicated volunteers and highlighting the incredible work they are doing to support our mission and make a difference for people living with ALS and their families.

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Bob Scott needed a little bit of time, which is understandable. He’d been the primary caregiver to Doreen, his wife of 30 years, after she was diagnosed with ALS in 2020. She passed away in August of 2021.

For a while he wasn’t sure if he wanted anything to do with those three letters—ALS—ever again. But at the same time, he had this burning feeling in his gut that he should do something to help; that he had something to offer. He could try and make it all a bit more “fair.”

“I do not think it's fair, and I think that's probably the word that I use the most,” Bob said.

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And in a short time, Bob has found a way to do a lot. In addition to serving on our Florida Community Leadership Council, he also contributes his time to the Care Service and Advocacy committees, and the Palm Beach Walk to Defeat ALS® committee. Oh, and he rode 40 miles to raise funds for the 2023 Ride to Defeat ALS™ as well.

“I work with a number of folks who have lost their loved ones, whether it's children or spouses or sisters, brothers, mothers, fathers.” Bob said. “My energy level is increased each and every time I work with them, each and every time I get together for committee meetings, each and every time we get together in ALS support groups.”

Through everything he does in support of the ALS community, Bob keeps his focus on the challenges faced by people living with the disease and their caregivers and how to ease those challenges where possible. In addition to serving on the Advocacy committee, Bob has spent time personally advocating with state and federal lawmakers on issues he and his wife faced while living with ALS.

“I saw some inequities around how folks with motor neuron diseases are handled as far as Social Security disability insurance goes. My wife always worked throughout her life and she had very nice Social Security bundle waiting for her once we retired,” Bob said.

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But because his wife was the primary caregiver to their daughters, she worked part time for the last 10 years of her career as a substitute teacher. That meant that as she was living with ALS, she hadn’t worked long enough—and recently enough—under Social Security regulations to qualify for disability benefits.

Bob thought that just wasn’t fair, and he went to his congressman’s office to say so. That’s when he got an interesting request. "My congressman's office asked me to write a bill, which I thought was a little strange. I was kind of like—aren't you the guys that write the bills? But they said, ‘you know subject matter much better than we do.’ So, I took a shot at it."

So, Bob wrote a bill, “Google is your friend,” he said, and delivered it back to his congressman’s office. “They were really surprised that I had actually gone ahead and done it,” and now through some twists and turns, it is actually percolating on Capitol Hill. As anyone with a passing knowledge of Schoolhouse Rock! knows, that’s still a long way from becoming a law, but Bob’s bill to make things a little more “fair” is still a possibility.

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Until there’s a cure, ALS is never going to be fair to those who face it. Bob knows that; he’s lived it. But that doesn’t mean he’s going to stop trying. “I do feel that I can make a difference. And so as long as I feel as though I can make a difference—whether it's on Leadership Council, the committees that I work on, as well as the support groups—I’ll continue,” he said.

Thank you, Bob, for all that you do to support the ALS community, and for allowing us to share your inspiring story this month. And thank you to all of our volunteers who so graciously give their time to help support the ALS community. We could not do what we do without you!

To learn more about how you can get involved in the fight against ALS like Bob, visit our website HERE.

To continue following 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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