For years, doctors thought Jenna Keindel had limb-girdle muscular dystrophy, even though they couldn’t find the exact gene that was causing the disease. This all changed when Jenna read a research article about an autoimmune disorder that mimicked muscular dystrophy – sending her life, and diagnosis, on an entirely new path.

Teresa Buffone knows too well how helpless it feels to have a loved one diagnosed with a neuromuscular disease. Her husband, Frank, died of myotonic dystrophy. Eight people in her family also have the genetic condition. Until now, patients have had to go elsewhere to take part in clinical trials.

When neuromuscular patients have 24-hour breathing issues, a hole is usually made surgically in their windpipe and a tube inserted that is hooked up to a ventilator, to help them breathe. However, the CANVent Program, developed at The Ottawa Hospital, uses nonsurgical, noninvasive ways to help patients breathe on their own.