When John Ferro was diagnosed with ALS in August 2019, he had already been living with unexplained symptoms for nearly two years. It started subtly—his right hand wasn’t as nimble as it used to be. Fine motor skills slipped away, but like many, John pushed off going to the doctor. When he finally mentioned it at a routine checkup, his doctor noticed muscle atrophy in his arm and shoulder and referred him to a neurologist.
What followed was an 18-month journey of tests, treatments, and uncertainty. Initially, doctors suspected a rare ALS mimic and put him through a grueling year of IV immunoglobulin infusions—three days each month—without improvement. Finally, at VCU, after meeting with Dr. Kelly Gwathmey, he received the diagnosis: ALS.
Living With ALS
At the time, ALS had mostly affected John’s right arm and hand. Over the years, the disease has caused both arms to atrophy, but John continues to find ways to stay independent—using adaptive clothing, specialized tools, and sheer determination. In 2021, when swallowing became a challenge and weight loss was a concern, he opted for a feeding tube while his breathing was still strong. That decision restored his nutrition and energy, allowing him to keep doing what mattered most: living life with his wife, four children, and two grandchildren.
John draws strength from his faith, his upbringing, and a deep belief in hope. A book that was a gift from his son, The Anatomy of Hope, reinforced what he already knew—hope is not wishful thinking; it’s a force that sustains.
A New Opportunity: The Expanded Access Program
About a year ago, John’s neurologist told him he could join an Expanded Access Program (EAP) for Pridopidine, a small molecule medication being studied for its ability to penetrate cells—including the brain’s protective barrier. On September 11, 2024, John began taking two 45 mg pills a day.
The changes were noticeable. Swallowing pills—once a daily struggle—became easier. Foods that used to get caught in his throat no longer did. Even more significant, his breathing—which was already good despite his disease progression—showed improvement. His lung function (FVC) climbed back to over 100%.
Why EAPs Matter
John has no doubt the medication has improved his quality of life and may even have slowed his progression. Other approved treatments had given him little benefit—and sometimes serious side effects. Pridopidine has been different.
“Most of us with ALS don’t have time to wait,” John says. “If there’s already a medication showing promise, we need access. These programs don’t just help patients—they give doctors critical insights into how these drugs work in real life. In some small way, I’m helping with the research.”
John has seen too many friends in support groups lose their lives to ALS. He knows firsthand that every bit of reprieve matters. “If my breathing had continued to go down, that’s what gets you,” he says. “That alone is huge. This program has given me time, strength, and hope. These are not wasted funds—this is life-saving work.”
Looking Forward
Today, John continues to live each day with gratitude, advocating for research and access to promising treatments. He’s a mentor with I AM ALS, offering guidance and encouragement to others navigating new diagnoses.
“I’m a small drop in the bucket,” John says, “but I’m happy to be here. And I’m thrilled to be part of something that’s making a real difference.”