Archive: August, 2012

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Canadian Neuromuscular Disease Registry (CNDR) reaches milestone!

The Canadian Neuromuscular Disease Registry (CNDR) has reached the milestone of 1000 patient enrollment! This is a significant achievement for the CNDR because as the number of patients in the registry increases, so does the registry’s ability to meet its goals of increasing understanding of neurological diseases and the burden they create; improving clinical care and disease management; and helping to facilitate research and clinical trials.

The CNDR is a Canada-wide registry of people diagnosed with a neuromuscular disease. It collects important medical information from patients across the country to improve the understanding of neuromuscular disease and accelerate the development of new therapies.

The term neuromuscular disease refers to over 40 different conditions that affect how muscles and nerves work. These diseases are both rare and complex, and affect many people of all ages around the world.

Finding treatments for these diseases has been challenging but recent medical and technological advances are changing that. New techniques and tools allow doctors and researchers to look at medical data from large groups of patients. This helps them find better ways to manage each disease and to develop new therapies.

Continue to help the CNDR on their mission.  If you have a neuromuscular disorder, sign up to join the registry and read their most recent newsletter.

Peer to Peer Insight: “Travel is possible for everyone”

With Youth in Action (YIA12) less than a week away, youth along with their families and caregivers, will be heading to Calgary very soon.  Many participants will be flying by air so we took the advice of Dale, a seasoned traveller, on his best practices for air travel.  Hope everyone on their way to YIA12 this week has a great flight. See you soon!

I’ve been playing power soccer for 14 years and have been on the Provincial and National teams.  Because of power soccer I’ve traveled a lot and have learned a lot about what and what not to do.

For air travel, first I make sure that I have everything I absolutely need in my carry on. Baggage can always be lost.  I carry on medication, the Roho cushion from my chair so it doesn’t get damaged, and my sling.  Some of my teammates also carry on BiPAPs and powerchair chargers. Any liquids should be double bagged and in the amounts that are allowed. I carry on anything I can’t be without for 48 hours and can’t buy when I get there.

The morning of the flight I sit on my evacuation sling to be used for transferring. The airline staff let anyone that needs any help board early.  If it’s an Air Canada flight in Canada, they have The Eagle Lift (a hoyer lift that fits down the aisle) I let them know ahead of time that I’ll need it.  As I’m on the way to my seat, I’ll have someone traveling with me taking any loose parts off my chair and taping them to it.

They also need to label the manual release levers and places to lift by, and disconnect the power.  Then they let the baggage handlers know that my chair has non-spillable batteries that don’t need to be removed.

At the other end I take my pre-arranged transportation to the hotel where my pre-arranged equipment is.

The rest of the trip I have fun!  I might take the competition seriously, but I still have fun.  I’ve been to Paris, Montreal, Atlanta, Arizona, California and more.

-Dale

This article was taken from the Bridges to the Future newsletter.  Visit their website to read  the newsletter or learn more about the Bridges program.

Muscular Dystrophy Canada volunteers honoured with Diamond Jubilee Medals

30 individuals who have made great contributions to Muscular Dystrophy Canada and in the lives of individuals living with neuromuscular disorders have been awared Diamond Jubilee Medals!

The Governor General of Canada’s website explains that “a commemorative medal was created to mark the 2012 celebrations of the 60th anniversary of Her Majesty Queen Elizabeth II’s accession to the Throne as Queen of Canada. The Queen Elizabeth II Diamond Jubilee Medal is a tangible way for Canada to honour Her Majesty for her service to this country. At the same time, it serves to honour significant contributions and achievements by Canadians.  During the year of celebrations, 60 000 deserving Canadians will be recognized.”

On behalf of Muscular Dystrophy Canada’s Board of Directors, volunteers and staff, as well as persons affected by neuromuscular disorders from coast to coast, Catherine Sherrard (CEO) extends her heartfelt congratulations to the following individuals for having been nominated by Muscular Dystrophy Canada and selected as recipients of the Queen Elizabeth II Diamond Jubilee Medal.

Cindy Balayewich

Vancouver, BC

Judy Germond

London, ON

Allen Parlee

New Maryland, NB

Alan Bartley

Lorette, MB

William Grindlay

Aldergrove, BC

Art Pringle (deceased)

Bedeque, PEI

Francoise Beland

Orleans, ON

Derrick Harty

Dartmouth, NS

Steve Richardson

Moncton, NB

J.P. Beland

Orleans, ON

Brian Keller

Nepean, ON

Dr. Louise Simard

Winnipeg, MB

George Brinton

Surrey, BC

Greg Knight

Glencoe, ON

Sharon Sparks

Saint John, NB

Joe Chowaniec

Edmonton, AB

Graham Koshman

Langley, BC

William Sparks (deceased)

Saint John, NB

Helen Cornett

Windsor, ON

Ken Kramer

Burnaby, BC

Richard Steeves

Fredericton, NB

James Cumming

Edmonton, AB

Vicki Kwong

Vancouver, BC

Kees Tiekstra

Athens, ON

Nancy Cumming

Edmonton, AB

Luke Melchior

Victoria, BC

Marilyn Watson

Vancouver, BC

Cathy Cunningham

Penticton, BC

Rick Mills

Innisfil, ON

Kelly Zacharias

Smithers, BC

As a result of the support of hundreds of volunteers just like these recipients, Muscular Dystrophy Canada is able to enhance the lives of those affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well funded research.

The medals will be presented during a variety of events throughout the next several months.

Once again, congratulations to the recipients and thank you to all of Muscular Dystrophy Canada’s volunteers for their ongoing support and commitment.

You Never Know What to Expect – Just Ask!

The following is the success story of Owen’s Odyssey, a team participating in the London Walk for Muscular Dystrophy.  They weren’t sure what to expect after setting ambitious fundraising goals for themselves but it ended up paying off and the team went beyond their expectations.  Aim high! You know what what will happen until you ask.  Congrats Owen’s Odyssey! The second half of the Walk for Muscular Dystrophy 2012 season kicks off Saturday, August 4th!

London’s 2012 Walk for Muscular Dystrophy was an outstanding success! With your generous support our team – Owen’s Odyssey -raised $6720 for Muscular Dystrophy Canada and Owen raised a good chunk of that bringing in an astounding $4195. Team Owen’s Odyssey was awarded the Top Fundraising Team and Owen was also the Top Individual Fundraiser, thanks to all of you!  He was very honoured to accept a trophy for the team’s accomplishments.

When we undertook this initiative, we were a little nervous that setting our team fundraising target of $3000 and Owen’s personal goal of $2500 might be too aggressive. Needless to say we were overwhelmed as the donations came in and the targets we had cautiously set were crushed! We are so fortunate to have such amazing friends and family who support and stand behind us as we tackle the challenges of muscular dystrophy. Every single donation that came in was a source of support and encouragement to us as a family and moved us deeply.

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