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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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Notice of Annual General Meeting

NOTICE OF
2019 ANNUAL GENERAL MEETING OF MEMBERS

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 for the following purposes:

1. Receiving the following reports:

  • Chair of the Board and the CEO;
  • Treasurer; and
  • Independent Auditor, together with the audited financial statements for the year ended March 31, 2019.

2. Electing the Board of Directors

3. Appointing the Auditors

4. Other business as may properly be brought before the meeting.

 

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Dave Ferguson
Secretary of the Board of Directors
Cowichan Bay, BC

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Patients living with Spinal Muscular Atrophy (SMA) in the province of Saskatchewan gain access to SPINRAZA™

April 22, 2019

Dear members of the SMA community,

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.

Biogen Canada is delighted to inform you that on April 12, 2019, the Government of Saskatchewan informed treating physicians in their province that patients living with Spinal Muscular Atrophy (SMA) have access to SPINRAZA™. The Saskatchewan Ministry of Health has made the decision to expand coverage of SPINRAZA™ to include the following, in addition to existing Type I patients:

  • Patients who are pre-symptomatic with two or three copies of the SMN2 gene;
  • Patients up to age 18, with symptom onset after six months of age and who have never achieved the ability to walk independently;
  • Patients that may have achieved the ability to walk independently (type III) as well as type II and type III patients over the age of 18 are encouraged to talk to their treating physician to apply for a case by case coverage.

With this decision, Saskatchewan has become the second province in Canada, following Quebec, to grant broad access to SPINRAZA™ for SMA patients. In March 2019, the Canadian Agency for Drugs and Technologies in Health (CADTH) provided a revised and expanded recommendation for access to SPINRAZA™ for SMA patients which include pre-symptomatic, Type I and Type II (with exceptions and limitations). Notably all patients over 12 years of age and all those who have reached the ability to walk independently (Type III) are denied treatment according to this recommendation. The provincial jurisdictions are ultimately responsible to define their coverage criteria and Biogen Canada is working with all these jurisdictions to provide broad access to SPINRAZA™ to patients that need it. The decision of the Government of Saskatchewan is further demonstration after 45 other countries and the province of Quebec that an ongoing and sustainable solution for covering broadly this life-long treatment is possible and can be implemented in all Canadian jurisdictions.

Biogen Canada is working diligently to find solutions and will continue to pursue and advocate for broad and sustainable funding for all SMA patients in Canada. Patients living with SMA deserve equal opportunity to receive access to SPINRAZA™ and Biogen remains committed to working with each provincial government outside of Quebec and Saskatchewan until broad access is granted to patients.

Sincerely,
Biogen Canada

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Read the news release

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