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

For Immediate release – June 25, 2019
Toronto, Alberta

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

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).

In Alberta, the following patients will now be eligible for reimbursement of SPINRAZA™, in addition to Type 1 patients:

  • patients who are pre-symptomatic with two or three copies of SMN2, or
  • have had disease duration of less than six months, two copies of SMN2, and symptom onset after the first week after birth and on or before seven months of age, or
  • are under the age of 18 with symptom onset after six months of age, regardless of the ability to walk.
  • Other patients who do not meet the expanded funding criteria may be considered in exceptional cases.

SMA causes major problems with walking, muscle strength, fine motor skills, and the basic physical functions of breathing, swallowing, and feeding.  SPINRAZA™ is a medication that has been described by patients as a “miracle”. Demonstrated improvements include stronger breathing and speech, increased strength and energy, and the ability to perform new actions such a rolling over and sitting or standing up without assistance.

This announcement follows closely on the heels of Ontario’s approval of expanded access, and comes after a concerted effort on the part of rare disease advocacy groups, patients and their families across the country to equalize access.

“We are excited to see the momentum building among our government partners across the country to increase access to treatments that improve the day to day lives of thousands of Canadians,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We will continue working alongside our clients to increase the understanding of our community’s needs on the national stage, ensuring that all Canadians, regardless of geography, have equal access to treatment.”

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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
Heather.Rice@muscle.ca
902-440-3714

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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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