Fire Fighters Fill the Boot Campaign Goes Virtual

For Immediate Release. May 5, 2020

Toronto, Ontario – For an incredible 65 years Fire Fighters across Canada have helped Fill the Boot. Unfortunately, due to COVID-19, Fire Fighters had to cancel their fundraising efforts this Spring, but the needs of people impacted by neuromuscular disorders can’t be cancelled. MDC still needs to provide critical services and programs to our clients.

Fire Fighters and MDC want to keep the tradition of helping to Fill the Boot going and since Fire Fighters can’t physically be out in their communities asking people to help, we have created a virtual Fill the Boot campaign.

With the help of many supporters, including Owen McGonigal who kicked off the campaign with the first #filltheboot video, we are able to keep Fill the Boot efforts going this year.

“I look forward to seeing our local Fire Fighters out in the community every year. They are an incredible support and inspiration to the neuromuscular community,” says Owen. “I challenge all of you to join me and post your own video, make a donation and challenge your friends. Together, we can support Fire Fighters and all Canadians impacted by neuromuscular disorders.”

Supporters can post their #filltheboot video on social media, donate at filltheboot.ca and challenge three friends to do the same! Visit us on Facebook, Instagram and Twitter to see the #filltheboot campaign in action!

“We’re so excited about this campaign and the opportunity to move our fundraising efforts to the virtual world. During such an unprecedented and uncertain time, one thing we know we can always count on is unwavering support from Fire Fighters,” says Stacey Lintern, Interim CEO of Muscular Dystrophy Canada. “Fire Fighters have supported MDC since its inception in 1954, we are incredibly grateful for their continued dedication to our cause and our clients”.

Find out more by visiting filltheboot.ca.

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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

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

Stacey Lintern appointed Interim CEO at Muscular Dystrophy Canada

For immediate release. April 27, 2020

Toronto, Ontario – The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as interim Chief Executive Officer, effective April 22, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012, and has worked in the not-for-profit sector for over 20 years. She has worked as a senior manager in large health organizations and in the government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. She has held a range of senior positions at Muscular Dystrophy Canada, most recently as Chief Operating Officer.

Stacey is highly regarded by colleagues, clients and stakeholders and her skills and talent will be particularly helpful as the organization navigates the challenges related to Covid-19.
We are committed to doing everything we can to continue to support our clients and their families and to advocate on their behalf.

The Board wishes to thank the outgoing Chief Executive Officer, Barbara Stead-Coyle, who has resigned, for her contribution to the organization.

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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

Stacey Lintern
Muscular Dystrophy Canada
Stacey.Lintern@muscle.ca
647-284-8706
1-800-567-2873 x1104

NMD4C propelling research forward for patients, scientists and clinicians

FOR IMMEDIATE RELEASE – Friday, January 31, 2020

Toronto, Ontario – A new partnership between Muscular Dystrophy Canada (MDC) and the Canadian Institutes of Health Research (CIHR) announces the creation of a new neuromuscular network in Canada.

Led by Dr. Hanns Lochmüller, NMD4C is an integrated research network for patients, scientists, and clinicians to improve outcomes and access to therapies for patients with neuromuscular disorders in Canada.

“We’re absolutely delighted to receive this catalyst funding for our NMD4C network. Because neuromuscular diseases are individually rare, but collectively affect many children and adults across Canada. Working together, pooling expertise and developing shared infrastructure at a national level is essential if we want to make rapid progress towards giving all Canadian patients world-class care and develop new treatments. This is a fantastic opportunity for doctors, researchers and the patient community to come together to do just that, and we can’t wait to get started,” stated Dr. Lochmüller.

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Key topics in Spinal Muscular Atrophy research discussed at first ever Muscular Dystrophy Canada SMA Research Summit

Toronto, November 15, 2019 – Research experts, the medical community, and industry stakeholders came together in Toronto this week at the inaugural Muscular Dystrophy Canada (MDC) SMA Research Summit to discuss new research and development.

“This summit was an important opportunity for us to review the latest developments and discuss where there are opportunities to enhance our role in the neuromuscular community in order to provide the proper support for individuals and families impacted by SMA,” said Barbara Stead-Coyle, CEO, Muscular Dystrophy Canada. “We thank our generous sponsors Biogen, Novartis, and Roche for providing us with the opportunity to have these important conversations, as well as our organizing committee—co-chairs Dr. Rashmi Kothary and Dr. Maryam Oskoui, as well as Dr. Craig Campbell and Dr. Lawrence Korngut.”

Key topics under discussion included new research, clinical trial developments, and the changing treatment and regulatory landscape in Canada.

“As part of MDC’s ongoing commitment to influence positive change, we convened leading medical and scientific experts to share and collaborate in ways that will foster medical advances and impact the lives of the individuals and families that we serve. We are excited to continue the momentum and are planning MDC’s first nationwide Neuromuscular Impact Conference, which will be held next year so our clients have an opportunity to hear and speak to the scientific and medical community,” said Daria Wojtal, Director of Research, Muscular Dystrophy Canada.

Spinal muscular atrophy is a severe, inherited, progressive neuromuscular disease that causes major problems with walking, muscle strength, fine motor skills, and the basic physical functions of breathing, swallowing, and feeding. Until recently, there were limited treatment options for SMA, but prognosis has been transformed with the recent availability of a number of effective disease-modifying therapies, notably nusinersen, known as Spinraza. Great advances have been made and there is a pipeline of clinical trials that are transforming what it means to be diagnosed with this rare neuromuscular disease. 

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

Alberta Fourth Province to Expand Access to Spinraza™ for Patients Impacted with Spinal Muscular Atrophy

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 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.
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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

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