Don Burke recently completed a remarkable 93-day road trip, covering 28,000 miles across 36 states and four Canadian provinces in his electric vehicle. This journey is part of why he decided to retire early. “This trip was a bucket list adventure,” he said, “and it reminded me just how much is still out there to see.”
Don’s connection to FSHD runs deep. His family is affected and has known about the disease since the 1970s. “I’ve always leaned into it, never denied or ignored it,” he said. He contributed to foundational efforts for the FSHD Society, attended the first support group meetings, participated in clinical trials, and even helped build the Wikipedia page on FSHD.
Don continues to adapt and push boundaries. “The sense of adventure never leaves,” he said. Through his work with the FSHD Society’s Patient Engagement Committee and his commitment to renewable energy, Don’s passion for advocacy shines in every aspect of his life.
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