Penny Hunsburger, centre, has a rare form of muscular dystrophy. Her parents, Laura Devlin and Chris Hunsburger, have raised $250,000 for research into the disease.GOOSEBERRY STUDIOS/Supplied
The organizers: Laura Devlin, Chris Hunsburger, Penny Hunsburger and Ellington Hunsburger
The pitch: Raising $250,000 and climbing
The cause: To fund research into Selenon-related myopathy
Laura Devlin and her husband Chris Hunsburger knew there was something different about their daughter Penny not long after she was born.
Penny was bright and full of life, but her muscles weren’t developing at a normal rate. “She was floppier. She couldn’t crawl and walking was hard initially,” Ms. Devlin recalled from the family’s home in Toronto.
It took around five years for doctors to finally determine that Penny had Selenon-related myopathy, a rare form of muscular dystrophy.
“Essentially it’s a disorder that will weaken her skeletal and respiratory muscles, progressively leading ultimately to respiratory failure,” said Ms. Devlin. “We were told that there are no treatments, no clinical trials.”
From that moment, Ms. Devlin and Mr. Hunsburger made a commitment to their daughter, promising to do everything in their power to help find a cure.
They launched Penny’s Promise Fund through the Toronto Community Foundation. They’ve raised $250,000 in the past three years through a variety of events including the Good Vibrations Gala which takes place this year on Nov. 15. Ms. Devlin is also launching Penny’s Dollar Cure Club to help families caring for medically complex children.
Club members are encouraged to donate a small monthly amount – between $3 and $10 – to provide a steady source of funding. “We want it to be like a sustainable research engine,” Ms. Devlin said.
Penny is now eight years old and while she requires respiratory support at night, she’s trying to lead as normal a life as possible. But she finds it hard to keep up with her 11-year-old brother Ellington at times.
“She over all is doing really, really well. But it’s hard because her future is uncertain,” Ms. Devlin said.
Penny’s Promise has been able to fund critical research at several institutions, and there’s hope that a treatment will be found. “It feels like this big mountain to climb, but we’re really determined to get there,” Ms. Devlin said.