• Reduce the timing between doses for patients with neuromuscular diseases

    Reduce the timing between doses for patients with neuromuscular diseases

    Jurisdictions across the country have been following National Advisory Committee on Immunization (NACI) recommendation to put off second doses and prolong the time between the first and second doses of two-shot COVID-19 vaccines to up to four months. However, persons with neuromuscular disorders may have respiratory involvement, require immunotherapy and are particularly vulnerable to severe …Continue Reading
  • MDC Change Agents 

    MDC Change Agents 

    As we celebrate National Volunteer Week, we are happy to share that the following members for MDC’s Advocacy Advisory Committee have been selected: Catherine Boivin Quebec Profession: Digital Technologies Specialist and Consultant Connection to MDC: Adult affected by a NMD Alfred Breton-Pare Quebec Profession: Senior CRA; Project Manager; Clinical Research Manager Connection to MDC: Parent …Continue Reading
  • Researchers from across Canada join The Tenaquip Foundation’s Walk4MD to raise awareness and funding for neuromuscular disorder community

    Researchers from across Canada join The Tenaquip Foundation’s Walk4MD to raise awareness and funding for neuromuscular disorder community

    FOR IMMEDIATE RELEASE April 15, 2021 Toronto, Ontario – For the second year in a row, Muscular Dystrophy Canada (MDC) is bringing the neuromuscular disorder (NMD) community together virtually for its annual Walk4MD, which raises much needed funds to support Canadians affected – and this year researchers are joining the Walk4MD family. On June 19 …Continue Reading
  • MDC’s Response to the CADTH and INESSS Recommendations for Onasemnogene abeparvovec: A Call for Newborn Screening

    MDC’s Response to the CADTH and INESSS Recommendations for Onasemnogene abeparvovec: A Call for Newborn Screening

    At the end of 2020, Health Canada approved Onasemnogene abeparvovec (Zolgensma®) for the treatment of pediatric patients with 5q Spinal Muscular Atrophy (SMA) with biallelic mutations in the SMN1 gene and three or fewer copies of SMN2 gene, or infantile-onset SMA, bringing renewed hope to Canadian families affected by SMA. Onasemnogene abeparvovec is the second …Continue Reading
  • Response to the Federal Government on Building a National Strategy for High-Cost Drugs for Rare Diseases

    Response to the Federal Government on Building a National Strategy for High-Cost Drugs for Rare Diseases

    Muscular Dystrophy Canada (MDC) in partnership with the Neuromuscular Disease Network for Canada (NMD4C) and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are pleased to provide the following summary of our recommendations for consideration into the National Strategy for Rare Diseases. Read moreContinue Reading
  • Muscular Dystrophy Canada Receives National Accreditation

    Muscular Dystrophy Canada Receives National Accreditation

    March 3, 2021 – Muscular Dystrophy Canada (MDC) has been awarded accreditation in Imagine Canada’s Standards Program for excellence in non-profit accountability, transparency, governance and fundraising. Created “by the sector for the sector”, the Imagine Canada Standards Program is the only national accreditation program that is designed for all Canadian charities and non-profits. To earn …Continue Reading
  • Muscular Dystrophy Canada calls on provincial governments to prioritize persons affected by neuromuscular disorders for COVID-19 vaccine

    Muscular Dystrophy Canada calls on provincial governments to prioritize persons affected by neuromuscular disorders for COVID-19 vaccine

    February 23, 2021 – Many people living with neuromuscular disorders (NMD) are at greater risk of developing serious symptoms and complications as a result of COVID-19 due to their often pre-existing cardiac and respiratory issues and chronic comorbidities. As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments …Continue Reading
  • Your Impact on the Neuromuscular Community in 2020 was Profound

    Your Impact on the Neuromuscular Community in 2020 was Profound

    Welcome to 2021. I think it’s safe to say we’re all looking forward to the fresh start and renewed possibilities that this year will bring. I want to take this opportunity to thank you for your support of the Canadian neuromuscular community in 2020. It was a challenging year for all, but your support directly …Continue Reading
  • MDC Statement

    MDC Statement

    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 …Continue Reading
  • Don’t Forget Me This Holiday Season

    Don’t Forget Me This Holiday Season

    The world is a scary and lonely place right now. Due to the global pandemic, we are isolated from our friends and family. Our routines have completely changed. We aren’t able to do the things we love and visit our favourite places. This is what life is like, every day, for many individuals affected by …Continue Reading