Driving Research Forward

The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Over the years Muscular Dystrophy Canada (MDC) has partnered with CIHR to ensure neuromuscular research is at the forefront of Canadian research. Together with CIHR, MDC has been able to leverage over 9 million dollars in funding and participate in national and international collaborations.

These programs include:

Rare Disease International Collaboration

MDC is proud to participate in this collaboration along with CIHR’s Institute of Genetics, and the European Joint Programme on Rare Diseases (EJP RD). This partnership brings together members from over 35 counties in Europe and Canada to jointly fund research programs on rare disease. The program works to increase cooperation and coordination among researchers and institutions in different countries. It is also dedicated to linking research funding organizations to extend and strengthen transnational cooperation on research into rare diseases. To date MDC has contributed to funding for collaborative research projects on spinal muscular atrophy, Duchenne muscular dystrophy, fascioscapulohumeral muscular dystrophy, Charcot-Marie-Tooth neuropathy, myotonic dystrophy, congenital muscular dystrophies and myopathies amongst others.

To see current funding opportunities through the European Joint Program on Rare Disease see: ejprarediseases.org

Neuromuscular Research Partnership

Between 2000 and 2012, MDC collaborated with the ALS Society of Canada and CIHR to form the Neuromuscular Research Partnership. Together the partners invested more than $43 million into 177 Canadian basic science projects, focused or applied neuromuscular research grants.

While this partnership is no longer evaluating and funding new grants, the research funded continues to grow, advancing treatment and care for individuals affected by neuromuscular disorders. For current funding programs see: muscle.ca/researchers/funding-guideline-deadlines/

THE FRIENDS OF GARRETT CUMMING RESEARCH CHAIR

Research Chairs are established through the generosity of donors and supporters who understand the critical need to invest in the best science to support the discovery of cures. Research Chairs build on existing strengths and improve emerging areas of important research. They provide enhanced training environments for students and postdoctoral fellows by exposing them to important research challenges and opportunities. The role played by Research Chairs in creating and mobilizing knowledge through research excellence is highly valued by Muscular Dystrophy Canada (MDC) and would not be possible without generous support from the community.

In 2008, the Chair was named in recognition of Garrett Cumming, a young man from Alberta affected by Duchenne muscular dystrophy. Garrett’s determined family, friends and community worked tirelessly to raise more than $1.6 million. MDC leveraged each donation, dollar for dollar, by obtaining an additional $1.5 million from the Government of Alberta’s Access to the Future Fund. By working together, we established the first endowed Chair for neuromuscular disorder research in Canada.

Dr. Toshifumi Yokota, a Professor in the Department of Medical Genetics at the University of Alberta, has held the title of the Friends of Garrett Cumming Research & Muscular Dystrophy Canada HM Toupin Neurological Science Endowed Research Chair since 2008. Dr. Yokota’s research focuses on understanding and developing treatments for muscular dystrophies and neuromuscular disorders. In particular, his team employs small DNA-like molecules called antisense oligonucleotides to tackle disorders in a precise and targeted manner. Dr. Yokota and his team have been able to expand their research and examine the effects of these molecules on other muscular dystrophies such as facioscapulohumeral muscular dystrophy.

Garrett Cumming

“Garrett didn’t want future generations to have to live through what he had to endure. When we were first deciding where to direct funds, we considered a lot of options. But Garrett’s number one concern when he was with us was that research continue, specifically research for treatments and cures. That’s why we decided to direct our support to a Research Chair with a focus on Duchenne muscular dystrophy.

Our drive, motivation and passion all come from Garrett. His strength and dedication to ensuring neuromuscular disorder research made progress for others affected by Duchenne muscular dystrophy kept us going and pushing even after we lost Garrett.

We are so proud of the part we played in funding the Research Chair. Garrett loved being the center of attention. He always lit up the room. Seeing something dedicated to his memory, driven by his vision, come to fruition was very impactful,” said James Cumming, Garrett’s father.

Dr. Yokota shares Garrett’s vision. “My research goal is to improve the quality of life of people affected by devastating disorders, like Duchenne muscular dystrophy, using new technologies including antisense oligonucleotides and genome editing. After holding this Chair, my goal is one step closer to reality. I am forever grateful to donors, in particular The Friends of Garrett Cumming and MDC, for making this research possible,” said Dr. Yokota.

The Cumming Family & Muscular Dystrophy Canada

“What makes MDC stand out is the incredible community effort, in both raising funds and awareness. The funds are desperately needed and are immediately put to very good use. There are a wide variety of neuromuscular disorders affecting a wide range of people, and no two people experience a disorder the same way.

I’ve met so many families who don’t have the support they need. It’s crushing. Many families don’t have the capital for critical equipment and services. That’s why supporting MDC is so important for us,” added James.

The Canadian Institutes of Health Research (CIHR) is Canada’s federal funding agency for health research. Over the years Muscular Dystrophy Canada (MDC) has partnered with CIHR to ensure neuromuscular research is at the forefront of Canadian research.

In 2020, MDC and CIHR invested $1.2M to launch a pan-Canadian neuromuscular network in Canada. Led by Dr. Hanns Lochmüller, the Neuromuscular Disease Network for Canada (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.

The goals of NMD4C are to:

• Build and sustain a new network of stakeholders who have interest in improving research and care for individuals living with neuromuscular disorders;
• Train and educate the next generation of neuromuscular disorder-specific clinicians, scientists, and patient advocates to improve the quality of care and research;
• Raise the standard of care for neuromuscular disorders and access to therapies across Canada, by developing and providing the right information, to the right audience, at the right time;
• Expand access to research resources and build research capacity by uniting local efforts across Canada and linking to international activities.

NMD4C builds on existing national initiatives such as the Canadian Neuromuscular Disease Registry (CNDR), the Canadian Pediatric Neuromuscular Group (CPNG), and the former neuromuscular network CAN-NMD.

Visit neuromuscularnetwork.ca to learn about current initiatives such as:

• Training and Education
• CPD- Accredited Webinars
• Clinical and translational empowerment of young scientists
• Mystery-cases Rounds
• Clinical research curriculum for neuromuscular fellowship programs
• Expert patient capacity building
• Patient Registries
• CNDR
• Biobanking
• Clinical Trial Coordination Resources
• Clinical Guidelines

Established through the generosity of Tribute Communities, the Rachel Fund supports research into Myotonic Dystrophy, a common neuromuscular disorder. Since its creation in 2005, the Rachel Fund has provided more than $1.5 million towards research into the genetic, cellular and biochemical processes of myotonic dystrophy, as well as therapies for its treatment.

Today the Rachel Fund is supported by many donors who are interested in myotonic research. A full list of projects is available here

The first SHAD’s R&R event took place in 1973 and raised about $500. Over the years, this incredible event has developed into a large tournament that raises vital funds for neuromuscular disorder research. After more than 45 years, the SHAD’s R&R supporters have raised more than $5 million dollars to support life-changing research.

SHAD’s R&R selected MDC as its charity of choice after much research. It was determined that MDC has the least amount of administrative overhead with most of the donations received being directed at actual research and providing assistance for those affected by neuromuscular disorders. This remains true today – and is why MDC is still the benefactor of the SHAD’s R&R event and fundraising efforts.

Because of the incredible funding from SHAD’s R&R over the years, we have been able to invest in life-changing research and clinical trials in Canada. For example, we were able to support a project that has facilitated virtual care for children and adults with ventilation. The results of this study have been impactful in the pandemic.

Incredible support from donors like SHAD’s R&R has meant that for the first time, treatments are available for Canadians affected by neuromuscular disorders!