NMD4C: The Neuromuscular Disease Network for Canada

We are excited to share that all babies born in Canada can now be tested for spinal muscular atrophy (SMA), a potentially fatal neuromuscular disorder. This milestone has been achieved through the leadership of Muscular Dystrophy Canada (MDC) and is the result of a three-year project working with each Canadian province and territory.

“This initiative holds immense value for the entire Canadian neuromuscular and rare disease community, laying the groundwork for future transformative and life-changing initiatives,” said Dr. Homira Osman, VP of Research and Public Policy, Muscular Dystrophy Canada and Co-Principal Investigator, NMD4C. “There are many progressive neuromuscular disorders where time is of the essence: early diagnosis and prompt access to treatments are critical drivers to achieving the best possible outcomes. MDC will now leverage the knowledge and findings gained from this initiative to ensure other neuromuscular disorders are included in newborn screening programs nationwide.”

Read the full press release from MDC

Highlights of the Press Release:

• This milestone means infants diagnosed with SMA, the most fatal genetic disorder in children under two years of age, can receive life-changing treatment before symptoms even develop.
• It marks the first neuromuscular condition to be added to screening panels across the country.
• The addition of SMA to newborn screening panels in all provinces and territories breaks down barriers and inequities families face simply because of where they live. It also acknowledges that screening for rare genetic diseases and access to early care results in positive health outcomes and long-term cost benefits for everyone.
• In 2020, only Ontario and the Baffin region in Nunavut screened for SMA at birth. Today, regardless of where in Canada a child is born, they will receive the same screening; and, if SMA is diagnosed, the same healthcare, treatment and opportunity to thrive.

For more information please contact:

Homira Osman

Vice-President Research & Public Policy

Muscular Dystrophy Canada

437-912-9037