News – Page 15 – Muscular Dystrophy Canada

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

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.
Electing the Board of Directors
Appointing the Auditors
Other business as may properly be brought before the meeting.

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

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 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.

Brayden’s Journey

I met Brayden Graft when he was just five-days-old. Little did I know then the impact he would have on my life.

Individuals, like Brayden Graft, diagnosed with Duchenne Muscular Dystrophy need your support to live rich, full lives.

My friends Leanne and Tony had been fostering children for about five years and already had a baby at home when their social worker called about Brayden. They didn’t even think twice about taking him home.

You probably have friends just like Leanne and Tony. Humble, hardworking people with a ton of love to give. Leanne has always had a soft-spot for children, with four of her own, but as her kids grew up and left home she knew she and Tony had more love to give.

Eighteen-months-later they were offered the chance to adopt Brayden and once again they didn’t hesitate.

They couldn’t imagine life without him. He had become their precious, fun-loving son.

Just a couple of months later, Brayden was diagnosed with Duchenne Muscular Dystrophy (DMD).

This month, my team members and I celebrated International Fire Fighter Day, and in honour of that, I hope you will read Brayden’s story and consider making a donation to Muscular Dystrophy Canada (MDC).

MDC presents CADTH With GMG Patient Submission

MDC pleased to provide CADTH with a patient submission from our generalized Myasthenia Gravis (GMG) community in support of Soliris. MDC remains committed to ensuring that neuromuscular clients have access to the latest treatments that offer positive health outcomes.

Download the patient submission

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 muscle.ca or call our toll-free number at 1-800-567-2873.

MEDIA CONTACT

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca

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.

Treating Duchenne Muscular Dystrophy Focus of New Research Partnership

For Immediate Release – April 4, 2019

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. Two research projects will be funded:

Dr. Anthony Gramolini: Non-viral, immune-modulatory nanoparticles for delivery of CRISPR/Cas9 as a treatment intervention for Duchenne Muscular Dystrophy.
Dr. Michael A. Rudnicki: Exosomal Delivery of Wnt7a for treating Duchenne Muscular Dystrophy.

“For anyone impacted by a neuromuscular disorder, research offers hope that better treatments will be uncovered, and ultimately, a cure. Both of these research projects show very promising initial results and we are thrilled that this investment will help move the research forward,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We are thrilled to be working with Jesse’s Journey to fund this promising research and can’t wait to see what positive impacts it has on our clients and families.”
Barbara Stead-Coyle
CEO, Muscular Dystrophy Canada

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.

A national strategy to alleviate the high-cost of drugs for rare diseases will ensure more Canadians are able to access effective, life-changing treatments.

“This is an important first-step towards ensuring individuals diagnosed with a rare disease, such as a neuromuscular disorder, are able to access treatment without cost as a barrier,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We call on all Federal parties to focus on this very real issue facing Canadians.”

Rachel Andrews Story

It’s been a little over a year since I sat in a Neurologists office, with my husband by my side, and heard the words “I believe you have Facialscapulohumeral Dystrophy (FSHD)”.

My first response was, “say what?” It’s a mouthful for sure, but I’m fortunate my failing facial muscles are still able to say it.

Hello, my name is Rachel and I wanted to share my story with you because Muscular Dystrophy has impacted my life since well before my diagnosis. And, I believe more research and education will ensure Canadians like me don’t continue suffering with undiagnosed symptoms.

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.

MDC Welcomes Daria Wojtal as Director of Research

We are pleased to announce that Daria Wojtal has joined Muscular Dystrophy Canada as the new Director of Research. Daria comes to us from the Hospital for Sick Children and the University of Toronto, where she worked under the leadership of Dr. Ronald Cohn on her PhD in developing CRISPR gene editing technology for the treatment of neuromuscular disorders.