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Archive: June, 2019

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

Toronto, Ontario – 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).

In Ontario, expanded coverage of SPINRAZA™ will include the following, in addition to existing coverage for Type 1 patients:

  • patients who are pre-symptomatic with two or three copies of the SMN2 gene;
  • patients with a disease duration of less than six months, two copies of the SMN2 gene, and symptom onset after the first week after birth and on or before seven months of age;
  • patients under the age of 18, with symptom onset after six months of age and who have never achieved the ability to walk independently.

In addition, symptomatic Type 2 and 3 patients under the age of 18 regardless of ever achieving the ability to walk independently will be considered on a case-by-case basis. Other patients who do not meet the expanded funding criteria may be considered in exceptional cases.

This announcement makes Ontario the third province, following Quebec and Saskatchewan, to offer broader access to SPINRAZA™ for Canadians living with SMA.

“We are pleased to be working with our government partners across the country to increase access to treatments that are improving the lives of those impacted with rare diseases,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada.  “Working alongside our clients, we will continue to bring the needs of this community to the national stage until all Canadians, regardless of where they live in our beautiful country, have equal access to treatment.”

Biogen’s news release

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit www.muscle.ca or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT INFORMATION:

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

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Important Update On Phone Solicitations

June 5th, 2019 – FOR IMMEDIATE RELEASE

Toronto, Ontario

 

STATEMENT REGARDING PHONE SOLICITATIONS!

 

Muscular Dystrophy Canada does not use telemarketing services.

Several years ago, the Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event. A portion of the funds raised in past years were donated to MDC.

Muscular Dystrophy Canada can confirm a campaign soliciting donations for the Canadian Fire Fighter Curling Association has begun, seeking donations that support the Canadian Fire Fighter Curling Association.

We have received complaints regarding the tone and approach of solicitation calls. We have brought these to the attention of the President of CFFCA.

Should you have any concerns or questions please contact the Canadian Fire Fighter Curling Association directly. www.cffca.ca
We sincerely thank all of our generous supporters for making our work possible.
Barbara Stead-Coyle e-sig

 

 

 

Barbara Stead-Coyle
CEO

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About Muscular Dystrophy Canada

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please visit www.muscle.ca or call our toll-free number at 1-866-MUSCLE-8 (1-866-687-2538). 

Further information

For further information, images and interviews please contact Barbara Stead-Coyle at Muscular Dystrophy Canada by phone at 902-440-1257.

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