Archive: January, 2017

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Gift of Hope

gift-of-hopeWhen our son, Ethen, was diagnosed with Duchenne muscular dystrophy, we were suddenly faced with lots of questions: Who could help us? Who understood what we were going through?

Our family doctor recommended that we call Muscular Dystrophy Canada. We did, and since becoming clients, we have found Muscular Dystrophy Canada to be kind, helpful and always there for us!

How has Muscular Dystrophy Canada helped us? They have been an integral part of every parent–school meeting, providing teachers and students with important facts about muscular dystrophy. They also were there to explain the government assistance forms and help with the application process.

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Ontario Leadership Conference Highlights

on-confOn Saturday, November 5, 2016, Muscular Dystrophy Canada hosted its’ Bi-Annual Ontario Volunteer Leadership Conference at the Holiday Inn Toronto International Airport. This one-day educational and informative conference featured various speakers and presentations that were both motivating and inspiring.

Buzz Green, Chair of the Board, welcomed everyone and introduced CEO, Barbara Stead-Coyle, who presented an organizational overview and talked about the strategic plan for the next three years. Services staff highlighted how donor dollars are used to provide services to those affected by neuromuscular disorders and how we help to enhance the lives of those affected. (more…)

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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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How I See It: Hello 2017

hello-20172016 was a year full of lessons for me. I spent most of the year trying to figure out who I was, where I wanted to go, and questioning what I was doing with this life. It was the first full year I spent away from my family. There were many nights spent staying awake, questioning every decision that lead me here.

It was a very difficult year – probably the most difficult I have ever experienced. It was both mentally and physically draining. It got to a point where I wasn’t sure what I was going to do, and how I was going to go on. Months would pass by where I didn’t write a single word, and I just didn’t have the energy or motivation to do it. I stopped reading; I let my hobbies fade away. I complained about everything, and I found myself showing hatred more than kindness. Sometimes we hit a brick wall, and I think 2016 was the year I finally hit mine.

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