December 4, 2020
Statement from Stacey Lintern, Chief Executive Officer, Muscular Dystrophy Canada on a Collaboration with Novartis for National Newborn Screening in Spinal Muscular Atrophy (SMA)
“The remarkable story of Aiden Deschamps shared this week by Newborn Screening Ontario 
and the Children’s Hospital of Eastern Ontario demonstrates the profound impact newborn screening has on the quality of lives of children born with spinal muscular atrophy (SMA). We know that for these children, promising outcomes are possible with a timely diagnosis and early access to care and treatment. We applaud Ontario for recognizing this and being the first province to add SMA to their screening panel.”
“As an umbrella national organization that represents individuals impacted by neuromuscular disorders including SMA, we believe all Canadian babies should have an opportunity to realise their developmental potential. Building upon Ontario’s leadership, we are excited to embark on a collaboration for nation-wide newborn screening collaboration with Novartis Pharmaceuticals Canada Inc., who have committed up to $2 million. This investment coupled with our combined expertise will fuel the goal of making newborn screening for SMA a reality from coast-to-coast.”
“This landmark effort will bring together those with lived experience, medical experts, patient advocacy organizations, governments and other key stakeholders. We are incredibly proud of this important initiative and look forward to working with the SMA community across the country.”
For more information, contact:
Stacey Lintern
CEO, Muscular Dystrophy Canada
Phone: 647-284-8706
Email: Stacey.Lintern@muscle.ca
