05/28/2026
My name is Mindy Spencer, and I would like to talk briefly about my dad, Darrell Dugan.
He was a father of five, a grandfather, a brother, an uncle, and a supporter of everyone he loved. He was an active fundraiser for the Cystic Fibrosis Foundation in support of my niece, a former CASA advocate, and a volunteer tax preparer who always fought for what was right.
He loved to travel and hike with my mom, Mary, to whom he was married for 49 years. They had just bought a condo in Cape Coral, Florida, where they hoped to spend their retirement winters.
My family visited them in the summer of 2018. Around that time, he was beginning to experience mobility issues and was working with doctors to find answers. He was diagnosed with ALS in September 2018.
ALS is such a cruel disease. It stole his body quickly, but his mind remained brilliant. He had the quickest sense of humor, and watching ALS take that away was heartbreaking.
His disease progressed faster than we could keep up with. Reliable information was hard to find, so much of what we learned came from online communities and other patients. Thankfully, my dad was determined to learn everything he could. He educated himself about ALS care, advocacy, and the challenges patients face in emergency settings, helping our family navigate difficult decisions along the way.
In January 2019, he and my mom moved from Lafayette to Mahomet, Illinois, so we could help care for him. He died of ALS in May 2019 at age 77.
My dad instilled in me a spirit of lifelong learning and perseverance, which is why I continue to advocate for better outcomes for people living with ALS.
He was the strongest advocate for using knowledge to make a positive change in the world.
– ♥️
Follow the stories of more Project ALS community members like Mindy's this ALS Awareness Month.
