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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.

The Parent-of-Origin Phenomena in Congenital Muscular Dystrophy

CMD-resizeMuscular Dystrophy Canada is passionate about finding treatments and improving the quality of life for Canadians affected by over 150 different types of neuromuscular disorders. In order to do this, we have been dedicated to funding biomedical and discovery research to increase our understanding about these genetic disorders. Research has been successful at uncovering the causes and mechanisms behind several neuromuscular disorders, like Duchenne muscular dystrophy, there are still many unanswered questions with other conditions, like myotonic dystrophy.

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Reflections on Rare Disease Day 2017

rdd-logo-300x287Today, February 28, 2017 is International Rare Disease Day (RDD). While it is just one day on the calendar, people affected by rare diseases are impacted by their condition 24 hours, 7 days a week, 365 days a year.

A rare disease is defined as a medical condition that impacts a small percentage of the population, less than 1 in 2000 people.

• 80% of rare diseases have identified genetic origins whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.
• 50% of rare diseases affect children.

Muscular Dystrophy Canada supports research to find treatments for over 150 different types of rare neuromuscular disorders. You see, muscular dystrophy isn’t just one disorder; Different genetic mutations cause different disorders. While investments in research over the past decade have resulted in a tremendous increase in our knowledge, and understanding of the molecular causes of neuromuscular disorders, we still have a long way to go.

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New therapeutic development showing promise for infants with SMA

gettyimages-86802223The early cancellation of the clinical trial for the experimental drug nusinersen found that the difference in the children given the drug, and those on the placebo was so drastic that doctors determined they could no longer administer the placebo in good conscience. The drug nusinersen is designed to help those affected by spinal muscular atrophy (SMA).

Dr. Craig Campbell is a scientist/paediatrician with the Children’s Hospital at London Health Sciences Centre who works closely with patients affected by SMA, and has seen first hand the encouraging signs the treatment has given some of his patients. We asked Dr. Campbell a few questions regarding the news of this clinical trial:

What is nusinersen and how does it work?

Nusinersen is an antisense oligonucleotide, which is basically a small piece of genetic material that works by tricking the cell machinery into reading and producing a normal SMN protein, from another gene that is very similar to the one missing in patients with SMA.

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Update: Respiratory Care Seed Grants

lungs

Muscular Dystrophy Canada has made it a priority to support research into areas that affect the quality of life of people living with neuromuscular disorders. One of the key issues that impacts on quality of life is respiratory health.  Through its focus on Respiratory Health, Muscular Dystrophy Canada has produced evidence-based resources such as The Guide to Respiratory Care for Neuromuscular Disorders, which is used by patients, families and clinicians across Canada and internationally to help guide care decisions.

Through the Seed granting process, Muscular Dystrophy Canada is supporting research projects that focus on enhancing respiratory health and quality of life in a range of neuromuscular disorders. The Seed granting process is now in its third year, with a number of new proposals currently being considered by a panel of expert reviewers. The results of this research will guide evidence-informed care, and will contribute to the timely and efficient translation of innovations from the research setting to patient care settings. Please stay tuned to the website this fall as we announce the successful projects!

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