Duchenne muscular dystrophy is a rare and fatal genetic disorder “characterized by progressive muscle degeneration and weakness” because of changes to a certain protein that helps keeps muscle cells intact, according to the Muscular Dystrophy Association.
“We started out Finn’s Friends just wanting to tell Finn’s story, and as our organization grew we started telling a lot of family’s stories in the Duchenne community,” Finn’s Friends Founder Paula Florczykowski said. “Being able to be recognized, we feel like it gives our organization an extreme amount of confidence that we are doing what we say we’re going to do, bring awareness to Duchenne and to our organization.”
Florczykowski’s son, Finn, was diagnosed with Duchenne in 2018. His story is detailed on their website.
“Our happy, energetic boy will soon struggle to walk or do any normal childhood activity. DMD is incurable and irreversible, eventually destroying the muscles that control the heart and lungs, proving fatal. Like any toddler, he loves running, being chased, balls, bubbles, his puppy Owen and playing with his big brother at our home in Longview, Texas.”Finn’s Friends
“Our nonprofit actually helps other families with travel assistance, with mobility equipment,” Florczykowski said. “We also have a golf tournament… if you want to donate to the tournament. All money raised for our events goes back to the Duchenne community to help with those costs.”