Drs. Robin Parks (left) and Jodi Warman Chardon are confident that, with neuromuscular experts working together, their research will translate into treatments for tomorrow.

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.

Eight people in Teresa Buffone’s family have the genetic condition for neuromuscular disease. Her husband, Frank, died of myotonic dystrophy.

Until now, patients have had to go to Montreal, Toronto, and even Miami to take part in clinical trials to help further the research in neuromuscular diseases and, hopefully, discover an effective treatment.

But, in May 2018, patients began going to The Ottawa Hospital NeuroMuscular Centre – one of the biggest neuromuscular centres in Canada.

“Finally, we’ll have a clinical trial centre for ALS and neuromuscular diseases right here in Ottawa, and people won’t have to travel far for these trials,” said Teresa, whose son was accepted into a clinical trial in Rochester, New York, but didn’t take part because it was too far to travel.

“We want to offer more than just a diagnosis,” said Neurologist Dr. Jodi Warman Chardon. “I could give people their diagnosis in the kindest, most compassionate way, but there need to be more treatments to change their lives for the better.”

More than 10,000 people in eastern Ontario are affected by neuromuscular diseases – medical conditions that get worse over time and impair how muscles and nerves work. Many of these diseases (such as ALS, myotonic dystrophy, or muscular dystrophy) weaken the muscles, cause difficulty with walking, swallowing, breathing, and cardiac processes, and are often fatal.

Dr. Warman Chardon knew that Ottawa is a hub for neuromuscular disease research, with 200 doctors, nurses and scientists (the most of any centre in Canada), including Dr. Michael Rudnicki, who is exploring stem cell treatments for Duchenne muscular dystrophy. Dr. Warman Chardon thought there was no reason why clinical trials that become the latest treatments couldn’t be offered in Ottawa. She teamed up with Senior Scientist Dr. Robin Parks, who was conducting research on neuromuscular diseases.

Funded by generous donor support, The Ottawa Hospital NeuroMuscular Centre opened its doors to patients in May 2018.

Their dream to have a centre that would bring these experts together in one place caught traction. In 2016, The Ottawa Hospital began raising funds to build a future centre of excellence. Thanks to incredible donor support, The Ottawa Hospital NeuroMuscular Centre opened its doors to patients in May. The centre will be one of the biggest neuromuscular centres in Canada.

“What’s exciting is it’s more than just a clinic – it’s a clinical research centre,” said Dr. Parks. “So the idea is to do research and get results that will then feedback to the patient to provide insight into new therapies for them.”

Drs. Warman Chardon and Parks are confident that, with neuromuscular experts working together, their research will translate into treatments for tomorrow.

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