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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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INTERNATIONAL DAY OF PERSONS WITH DISABILITIES: Lana on Goal #9

unsustainabledevelopmentgoals_brand-01The third of December marks the United Nations International Day of Persons with Disabilities. This year’s theme is the 17 Sustainable Development Goals, which were adopted by countries all over the world on September 25th, 2015. These goals look to move towards the ending of  poverty, protecting the planet, and ensuring prosperity for all as part of a new sustainable development agenda.

We asked our friend and colleague Lana Miley to speak to one of the Sustainable Development Goals and tell us what it means to her as someone who lives with a disability. Lana chose goal number nine: Industry, innovation and infrastructure. Here’s what she had to say about it:

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CDA Consultations: National Youth Forum

peelertrudeau Alex Peeler wrote for us about his petition for a National Assistance Program for Persons with Disabilities. This was shortly before he was heading to Ottawa to participate in the National Youth Forum for the CDA consultation process. Here he recounts his experience:

I applied for the National Youth Forum in August after hearing about the consultations for the Canadians with Disabilities Act (CDA) through Muscular Dystrophy Canada. I decided to apply because I have always been an active advocate for persons with disabilities and saw this as an opportunity to put my passion for advocacy to good use. Then, in early October, I received an email from the Minister of Sport and Disability, Carla Qualtrough, saying that I had been chosen to participate in the consultations. I was very excited and proceeded to make the necessary arrangements for my trip to Ottawa.

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Rock on for a cure!

Crew and his painted rocks

Crew and his painted rocks

Ethan (13) and Crew (8) Poirier are no strangers to raising money to support the work of Muscular Dystrophy Canada. They have accompanied the Anderson family to each and every Brandon Walk for Muscular Dystrophy since the Walk started in the community back in 2010. They got involved because of their friend Andrea Anderson who was an inspiration to all that met her. Sadly, as a result of complications with Limb Girdle Muscular Dystrophy, Andrea passed away on April 11, 2015. Ethan and Chase have remained active and involved in honour of their friend Andrea.

The boys have found unique ways to fundraise including hosting an annual Valentines’ Day fundraising party with their grandparents, creating and selling rainbow loom bracelets, preparing and selling sold baked goods at a garage sale, and more. This year, Crew decided that he wanted to raise money for the Walk by selling beautifully painted rocks that he made over the summer – and his contribution helped Team Andrea raise over $1,500. Crew is already planning his rock sales for next summer and plans to expand to create and sell even more rocks!

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