Each year, the Association’s Hero Awards recognize special individuals in the ALS community who have made a significant impact for those living with the disease. Their stories of courage and determination in the face of unimaginable adversity are a reminder that heroes aren’t born but made from the choice to lean into challenges and commit to the greater good.
This year’s Hero Awards were presented in-person in July at our inaugural ALS Nexus conference. Over the next month, we will introduce you to these heroes and the impact they have had on the ALS community, starting with Ron Faretra.
Ron Faretra
It should be no surprise that Ron Faretra turned his ALS diagnosis into an opportunity to serve the ALS community. Service, after all, had been part of his entire life. You don’t spend 27 years in the Air Force and followed by nearly 20 years of in municipal government as a finance director if you aren’t focused on serving others.
But the focus of Ron’s service changed in 2017 with a pain in his back.
“I had a lot of stenosis in my back. I finally got tired of the pain in my legs, so I went to see a surgeon to cut my back open and fix me,” Ron said when accepting his Hero Award. “Except that when he took me into this room to show me what he was going to do, I fell. And when I fell, he picked me up and he said, ‘have you ever seen a neurologist?’ and I said ‘well, no.’ And he said, ‘well, you need to see one because your problem's not in your back.’” He did see the neurologist and got the diagnosis no one wants: ALS.
Ron’s involvement with the ALS Association would begin soon after, and only expand over time. He became actively involved with our ALS Focus survey program and served on the ALS Focus Patient and Caregiver Advisory Committee since 2020; he is currently the committee co-chair. As if that wasn’t enough, he also serves on the ALS Focus Steering Committee and works with industry, government, and academic partners to guide Focus research.
“The one thing I've learned: when you get diagnosed you do one of two things—you become a hermit, which is deplorable to me, or you get pissed off and you become an advocate to fight ALS,” Ron said. “And all of the people I know that have lived a very long time with ALS are staunch fighters for ALS.”
Ron’s work on ALS Focus is only a small slice of his involvement. In addition, he is an active support group attendee, DME loan closet volunteer, a NEALS research ambassador, and a top fundraiser for his local Walk to Defeat ALS®. Ron also finds time to serve on both the Mid-Atlantic Strategic Workgroup and South Carolina Leadership Council, and since 2021 has been an active member of Patients and Caregivers Together, an informal caucus of ALS volunteers who offer their insights and ideas to members of the Association Board of Trustees.
Not surprisingly, Ron has also been active in sharing his story with lawmakers on both the local and national level. “Ron is a dedicated advocate, and even while living with ALS himself, his work centers on helping others,” Amanda said. “Because his benefits are through the VA, he always shares with legislators that those benefits are the gold standard of care for people living with ALS, and everyone should get the same access and treatment as him.”
When you live in service to others, you quickly find out there is always more to do. Ron plans to continue to do all he can for the ALS community, and he continues to find inspiration from them. “I know a lot of other heroes that I've met. Some here, some back home,” he said. “I think all of us that fight ALS every day of the week, I think we're all heroes.”
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