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Press Releases

 

Media Inquiries

All media inquiries can be directed to communications@muscle.ca or by calling 1-800-567-2873.

Press Releases

 

Alberta fourth province to expand access to SPINRAZA™ for patients impacted with Spinal Muscular Atrophy

June 25, 2019 – Muscular Dystrophy Canada (MDC) commends the Government of Alberta for joining Quebec, Saskatchewan, and Ontario in expanding access to SPINRAZA™, a life-changing treatment for individuals impacted with Spinal Muscular Atrophy (SMA).

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More patients impacted with Spinal Muscular Atrophy in Ontario to gain access to SPINRAZA™

June 13, 2019 – More patients impacted with Spinal Muscular Atrophy in Ontario to gain access to SPINRAZA™
Muscular Dystrophy Canada (MDC) applauds the Government of Ontario for expanding access to SPINRAZA™, a life-changing treatment for individuals impacted with Spinal Muscular Atrophy (SMA).

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Statement Regarding Phone Solicitations

June 5, 2019 – The Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event. We sincerely apologize to our supporters and other Canadians for any inappropriate fundraising efforts used by the telemarketing company. We also wish to confirm that MDC does not use telemarketing services.

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Notice of 2019 Annual General Meeting

May 13, 2019 – NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Members of Muscular Dystrophy Canada will be held at the Doubletree by Hilton Toronto Airport Hotel 925 Dixon Road, Toronto ON, M9W 1J9 on Saturday, June 15, 2019 – 12:45pm Eastern Time

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PATIENTS LIVING WITH SPINAL MUSCULAR ATROPHY (SMA) IN THE PROVINCE OF SASKATCHEWAN GAIN ACCESS TO SPINRAZA™

April 22, 2019 – In response to the requests received by patients living with Spinal Muscular Atrophy (SMA), Biogen Canada would like to provide this latest progress regarding coverage of SPINRAZA™ (nusinersen) in the province of Saskatchewan.

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Treating Duchenne Muscular Dystrophy Focus of New Research Partnership

Toronto, Ontario – Muscular Dystrophy Canada (MDC) and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are joining forces to accelerate ground-breaking research focused on new treatments for Duchenne muscular dystrophy to the sum of $600,000.

Through this partnership, MDC will provide $300,000 with Jesse’s Journey matching the commitment.

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Federal government commits to national strategy to improve access to rare disease drugs

Toronto, Ontario – Muscular Dystrophy Canada commends the Government of Canada for committing $35 million, in its 2019 budget, to develop a Canadian Drug Agency to oversee the development of a new national formulary of prescribed drugs and a strategy to provide support for Canadians with rare diseases.

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CADTH review and Spinraza

Spinraza decision signals the need for a Canadian Rare Disease (or Orphan Drug) Framework

The drug review and approval process in Canada is complex. Many agencies from Health Canada, to Canadian Agency for Drugs and Technologies in Health (CADTH) and Institut national d’excellence en santé et en services sociaux (INESSS), to the Pan-Canadian Pharmaceutical Alliance and each individual provincial and territorial governments all share in the decision-making.

While ensuring real world evidence and improved health outcomes should be at the top of the list of considerations, cost becomes a significant determining factor. We understand that governments are faced with significant healthcare challenges and budgets are strained. However, timely and equitable access to care is the foundation of the Canadian health care system. It is the value we share, one that defines us and our health care system.

That is why the recent decision released by CADTH on March 1, 2019 related to the use of Spinraza to treat Spinal Muscular Atrophy (SMA) types 1, 2, 3 and 4, a rare neuromuscular disorder, cannot and should not be ignored.

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Muscular Dystrophy Canada applauds Quebec for approval of SPINRAZA

Recommendations provided by the Institut national d’excellence en santé et en services sociaux (INESSS), the regulating body in Quebec, have resulted in the approval of SPINRAZA (nusinersen) for Spinal Muscular Atrophy (SMA) Types 1, 2 and 3 patients in that province.

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2018/2019 Seed Grant Winners

A total of 5 research projects amounting to $235,000 will be funded by Muscular Dystrophy Canada (MDC) in 2018/19 through its Seed Grant Program and ongoing donor support.

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Statement Regarding Phone Solicitations

Several years ago, the Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event.

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Important Update – Biogen Resubmits Application

In response to your requests for information, please see below a brief update on the progress towards bringing SPINRAZA (nusinersen) to Canadian patients affected by Spinal Muscular Atrophy (SMA).

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Phone Solicitation Alert

Since 1954, Fire Fighters have been raising funds for Muscular Dystrophy Canada (MDC). Whether they are holding a boot drive, sitting on their ladders or camping out on a rooftop, their dedication and hard work it has made a significant impact on the lives of our clients and families.

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Phone Scam Alert

It has been brought to our attention that there is another possible phone scam related to MDC and Fire Fighters currently targeting Canadians.

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Pharmacare Policy Should Put Patients First

On behalf of the thousands of Canadians who are affected by neuromuscular disorders, Muscular Dystrophy Canada welcomes the federal government’s commitment to increase funding for medical research and study the introduction of a national Pharmacare program.

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Muscular Dystrophy Canada Announces Winners Of Seed Grant Competition

Muscular Dystrophy Canada (MDC) has selected the recipients of 2017/18’s Seed Grant competition. MDC was thrilled to receive a total of 9 submissions, making this the most successful call for submissions to date, and will fully fund 6 of the research projects.

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Muscular Dystrophy Canada Receives Canada Post Community Foundation Support

Muscular Dystrophy Canada (MDC) has received a $50k grant from the Canada Post Community Foundation for an important nationwide project that will impact thousands of people dealing with a neuromuscular disorder.

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Highlander Wine & Spirits Will Fundraise For Muscular Dystrophy Canada

This August 9th, 20% of all sales made nationwide on their Give Back Specials through their website will be going to Muscular Dystrophy Canada. Each month they choose one of the many amazing organizations in the city of Calgary, working to make the community a better place, and run an online fundraising sale for their programs.

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Muscular Dystrophy Canada can assist Waterloo man in securing muscular dystrophy mobility equipment

Muscular Dystrophy Canada is stepping forward with a public offer to assist Josh Kortlevene, as they do with all Canadians with a neuromuscular disorder, to ensure that he gets the equipment he needs.

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New Partnership To Benefit Neuromuscular Researchers

Muscular Dystrophy Canada is teaming up with Starratt Family Foundation to increase funding for the Seed Grant Program! This will increase the funding from $250,000 to $300,000 that will be available to invest in neuromuscular research.

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Christmas Miracle for an Ontario family

An Ontario family has had their wish come true with help from Muscular Dystrophy Canada (MDC), our partners and a caring Fire Fighter. Despite what they had been told, Bri Reynolds, will be heading home to spend Christmas day with her husband and children.

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