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$4.8 Million and counting….

Shad’s 44th annual golf tournament raises $175,000 for Muscular dystrophy

Since 1973, Shad’s R&R Golf Tournament has supported Muscular Dystrophy Canada’s efforts to improving the quality of life for the tens of thousands of Canadians with neuromuscular disorders and taking the lead in research for the discovery of therapies and cures.

This year, more than  200 participants from all sectors of the automotive aftermarket took part in a day of golf, dinner, and prizes with all proceeds going to Muscular Dystrophy Canada. The 44th annual Shad’s R&R for muscular dystrophy raised $175,000, bringing the total money raised since its inception to $4.8 million.

The proceeds from this golf tournament have been invested in world-class research projects that are helping to answer questions about neuromuscular disease and finding ways to improve the medical care and quality of life for the young children that are affected by these conditions. For the first time in history we are seeing new treatments and clinical trials that show incredible potential to slow or reverse the progression of some of the 160 different types of neuromuscular disorders. Now more than ever, people with neuromuscular disorders are living longer and more empowered lives.

All of this would not be possible without the ground breaking research taking place throughout Canada and beyond. This research would not be possible without donors and supports, like Shads, who continue to demonstrate incredible generosity.A very heartfelt thank you to the organizing committee including David, Keith Brad, Marilyn, Samantha and everyone involved. Your dedication to this cause is evident and your dedication so greatly appreciated.

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.

 

Daria Wojtal

 

Daria is also a long-time volunteer for Muscular Dystrophy Canada as a Planning Committee Member where she acted as a liaison between MDC and a team of scientists from SickKids who run scientific activities during the Walk for Muscular Dystrophy in Toronto.

Muscular Dystrophy Canada is excited about the work that Daria will be focusing on and the level of neuromuscular research knowledge she brings to the organization. She will be building out new programming to increase Muscular Dystrophy Canada’s investment and impact in research in Canada and internally through strategic partnerships.

Please join us in welcoming Daria Wojtal to the Muscular Dystrophy Canada family!

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Muscular Dystrophy Canada applauds Quebec for approval of SPINRAZA

For Immediate release – December 19, 2018
Toronto, Ontario

Muscular Dystrophy Canada applauds Quebec for approval of SPINRAZA for patients impacted by Spinal Muscular Atrophy Types 1, 2 and 3

Recommendations provided by the Institut national d’excellence en santé et en services sociaux (INESSS), the regulating body in Quebec, have resulted in the approval of SPINRAZA (nusinersen) for Spinal Muscular Atrophy (SMA) Types 1, 2 and 3 patients in that province.

This decision is the result of a refiling of the drug approval by Biogen early in 2018, after being reviewed and approved for use in Type 1 patients only.

The effectiveness of SPINRAZA was established in the pivotal ENDEAR and CHERISH studies and supported by multiple clinical studies. For individuals with infantile-onset (Type 1) and presymptomatic SMA results showed marked improvements in muscle function. How spinraza works

“Muscular Dystrophy Canada (MDC) was pleased to support both the initial and subsequent reviews by providing a comprehensive patient submission. Ensuring our community has a strong and credible voice in all matters related to trials and treatments is at the forefront of our work in Canada,” commented Muscular Dystrophy Canada CEO, Barbara Stead-Coyle. “This is a life changing treatment for our SMA community. We applaud the Minister of Health and Social Services Danielle McCann, and the Quebec government for reconsidering their initial decision and expanding access for more clients in Quebec.”

Stead-Coyle added “MDC’s commitment to ensuring SMA clients can access this treatment at an affordable price remains steadfast. There is still much work to do and we will continue to work tirelessly to ensure that all patients who may benefit from Spinraza will receive access as quickly as possible in Canada.”

A review from the Canadian Agency for Drugs and Technologies in Health (CADTH), the regulating body for the rest of Canada, is expected in the new year.

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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 1-800-567-2873.

MEDIA CONTACT INFORMATION:

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

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International Volunteer Day

Today, on International Volunteer Day, we thank and celebrate the wonderful group of supporters we have at Muscular Dystrophy Canada. From clients to family members, community supporters to like-minded organizations, healthcare professionals to Fire Fighters and beyond, you are making a difference in the lives of those impacted by neuromuscular disorders.

ThankYouVolunteers_wordcloud-E

Thanks to your ongoing commitment to MDC, we are able to provide more programs and services, invest more in research and continue vital advocacy efforts! You ignite our passion.

Thank you for being awesome today and every day!

Muscular Dystrophy Canada is calling for submissions of digital artwork! The chosen piece will be utilized in the creation of our Dr. David Green Awards. We are seeking artwork/photography produced by MDC clients that represents our brand. Potential themes could include community, cure, passion, ignite, hope and much more!

If interested in submitting artwork please send high resolution files to Jeff Sparks, Director, Volunteer Engagement and Human Resources at jeff.sparks@muscle.ca by February 15, 2019.

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Babies with SMA to be covered in BC for Life Saving Drug

Different types of Pills

Muscular Dystrophy Canada congratulates the BC government for their leadership in providing this important treatment to children impacted with SMA Type1. We continue to work tirelessly with governments and partners to ensure more Canadians with a neuromuscular disorder have access to the latest treatments.

We were please to participate in the first review of Spinraza with CADTH and INESSS through our patient submission and we have completed a second submission encouraging them to revisit the use of Spinraza in other types of SMA.

See more on this story

Globe and Mail
CTV News

 

Learn more about Spinraza

Spinzara to be Proviced for SMA Type 1 Patients
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The Tomesch Family Encourages Others To Live Their Lives

Tomesch family encourages others to live their best life and pursue their dreams

“When our son Jason was just two and a half years old he was diagnosed with Duchenne Muscular Dystrophy, a degenerative disease where your muscles continually deteriorate and daily tasks become more difficult as your body weakens,” says Jason’s mother, Sue.

Jason 2

Due to the progressive nature of neuromuscular disorders, families often experience a lot of bad news and have to overcome new challenges regularly. Five years ago, Jason was critically ill with aspiration pneumonia and spent six months in the hospital. He cannot eat, drink or talk loudly as he has a trache and feeding tube. He also relies on oxygen and a ventilator to breathe.

These circumstances do not define him as a person. Jason is now 25 and has a very important message to share with others who face similar challenges: Don’t be afraid to live.

“We so often focus on the negatives, the things we can’t do, the fear. But there is so much more than that. Get out there and live the life you want,” says Jason. “I still do so many of the things that I love and I want to encourage other individuals with neuromuscular disorders to continue to pursue their passions as well!”

“What we love about working with Muscular Dystrophy Canada is that they really want to help you have the best life that you can! And they provide you with the information and resources to do that,” says Jason.

“Connecting with others who have similar experiences or have faced similar challenges has been very helpful and inspiring for me. I hope others who are facing a new diagnosis or are struggling will reach out to these communities for support and friendship,” says Jason.

Jason 1

“Muscular Dystrophy Canada has helped us with many things since my diagnosis but specifically over the last five years. They helped us purchase a much needed track lift and other vital equipment, they helped us advocate for coverage that we weren’t receiving. They have supported us by providing information about grants, funding, and possible treatments which we weren’t aware of,” says Jason. “They have also provided me with opportunities to share my experiences with others. I have been asked to present to numerous groups including Walk participants. I’ve really enjoyed being able to share my story with others and connect with other members of my community.”

Jason and his parents, Sue and Dave, are very involved with the Walk for Muscular Dystrophy. Jason’s team has been one of the top fundraisers each year. They have raised an incredible contribution of more than $35,000 over the years which helps Muscular Dystrophy Canada continue providing critical support, funding and resources to all those affected by neuromuscular disorders in Canada.

“We know how hard it is to face a neuromuscular disorder diagnosis, which is why we continue to be so involved in events like the Walk for Muscular Dystrophy,” explains Jason. “We don’t want to see others go through the same struggles that we have faced. Any chance we have to bring more awareness to muscular dystrophy, the better.”

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