January/February 2011    Volume 2, Issue 4

Research & Services | Tidbits | Recently in the News | Archives

Muscular Dystrophy Canada to host Clinical Trials Webinar

Mark your calendars for Wednesday, February 23, 2011 at 6 pm EST. Muscular Dystrophy Canada will be hosting a one hour presentation that will provide answers to some of the most frequently asked questions about clinical trials.

Dr. Craig Campbell

Dr. Craig Campbell will provide an overview of clinical trials, and will highlight some of the current studies underway in Canada related to neuromuscular diseases.

You’ll learn:

  • What clinical trials are and how they work;
  • What are the benefits and risks of participating in clinical research;
  • What you should ask your doctor or healthcare provider before getting involved in clinical research;
  • How to find out more information about current and upcoming trials.

Dr. Craig Campbell is a Pediatric Neurologist at Children's Hospital London Health Sciences Centre, the Medical Director of the Neuromuscular Clinic at the Thames Valley Children’s Centre, and Associate Professor at the University of Western Ontario. He is the Principal Investigator for several clinical trials studying new therapies for muscular dystrophy.

Register now to participate in this free educational webinar:
Call - 1-866-687-2538 ext. 155
Email- info@muscle.ca
Online - Clinical Trials Webinar
Event information (.pdf)


Fire Fighters to hit the roof for muscular dystrophy

Fire Fighters hit the roof at the 2010 Edmonton Rooftop Campout

On February 22, Fire Fighters from 9 fire departments in Alberta, Winnipeg and Ontario will take part in campouts to raise funds and awareness for muscular dystrophy.

Fire Fighter Campouts are a community based fundraising event engaging local businesses, celebrities, dignitaries and the community alike to support local families affected by neuromuscular disorders.

The first campout occurred in 2005; a group of Edmonton Fire Fighters decided they needed a winter campout – on the roof of their fire hall! Over the years the event has expanded to include fire departments in neighbouring communities and other provinces.

Support Fire Fighters by paying them a visit or making a donation. For times and locations, visit muscle.ca.


Défi Gratte-Ciel 2011 set for Friday June 3

Organizers of the 14th annual Défi Gratte-Ciel/Skyscraper Challenge are hoping the event will attract 500 participants and raise $100,000 for Muscular Dystrophy Canada.

To date, the Skyscraper Challenge has raised $178,000 for muscular dystrophy. The Skyscraper Challenge is commonly regarded as an event for Fire Fighters, paramedics and police officers – but the general public is also welcome to try their athletic abilities at climbing the 1,125 steps or 48 floors of the Montreal Stock Exchange Tower, one of city’s most striking skyscrapers.

To register for the Skyscraper Challenge go to muscle.ca. Registration is $40 for those who register online prior to event-day; event-day registration is $50.

First left Captain Martin Guilbault and Lieutenant Benoît Leclerc of the Montreal Fire Department are the spokespersons for the 2011 Skyscraper Challenge

"Nearly the New Year" Gala of Hope raises over $74,000!

Comedian, Jimmy Flynn, performs at the 6th Annual "Nearly the New Year" Gala of Hope

The 6th annual "Nearly the New Year" Gala of Hope raised over $74,000 on behalf of Muscular Dystrophy Canada.

Funds will be used to help purchase much needed equipment, provide education and support, and fund vital research to find a cure!

Over 250 people attended this year’s gala, which took place at the Ottawa Crowne Plaza on November 19 and featured live and silent auctions, a raffle and a comedy show.

The hard work of honorary chairman Gary Cameron, and his dedicated committee did not go unnoticed. It is safe to say these individuals, along with the corporations who purchased tables, and donated auction items are the back bone of this event, and without their support the evening would not have been possible. We would like to extend a very special thank you to all of them.

Thank you to everyone who supported this event. Thank you to the Harold family for sharing your journey and inspiring words.


Buck-4-Luck (February 19 to March 17)

Buck-4-Luck is just around the corner. Lowe's is back on board for the fourth year in the Ontario region. Twenty-four Lowe’s stores will participate in Buck-4-Luck, one of Muscular Dystrophy Canada’s most recognizable fundraising initiatives.

Each year banks, restaurants, pubs, schools and retailers encourage patrons to support the Buck-4-Luck campaign by making a $1 donation to Muscular Dystrophy Canada. In exchange for their donation, customers receive a shamrock that they can write their name or the name of a loved one on, which is then displayed in a prominent area of the establishment.

Buck-4-Luck has raised more than $3.3 million for muscular dystrophy since 1991. Be sure to look out for shamrocks and support your local establishments!


Living Muscular Dystrophy Canada’s Core Values out in the Community

"Help us, help you!" That’s the message Dan Burgess wants to get out to the world.

In 1988, Dan was diagnosed with MS. Dan doesn’t have MS – he has Spinocerebellar Degeneration, a very rare form of muscular dystrophy with symptoms that are similar to an MS diagnosis.

It wasn’t until 1994 that Dan was correctly diagnosed with muscular dystrophy. With his new diagnosis, he was told that he would be in a wheelchair within a few years – almost 20 years later and Dan has beaten the odds. He gets around with the help of mobility devices, but does not use a wheelchair.

"I’m very fortunate. I know every day if I can physically get out of bed on my own it is going to be a good day," says Dan.

Dan Burgess rides his bike at the 2010 Toronto Walk for Muscular Dystrophy

Shortly after his diagnosis, Dan became involved with Muscular Dystrophy Canada. He became treasurer of the Toronto Chapter and since April 2007 has been serving as President. Although he has muscular dystrophy, when it comes to finding a cure, Dan thinks about the kids.

"I am involved in helping Muscular Dystrophy Canada to find a cure to help all the young people and to avoid the kids from suffering from muscular dystrophy. At the same time I have been affected with my disorder for nearly half of my life, so I would be reluctant to change my life again," explains Dan on the topic of what a cure for neuromuscular disorders would mean to him.

One of Dan’s goals in volunteering with the Toronto Chapter of Muscular Dystrophy Canada is to set an example for other people living with a disability.

"By volunteering with Muscular Dystrophy Canada, one of my goals is to show others who are disabled that we can contribute to society. I see and read about a lot of physically challenged people doing more in society every day. I just hope more get involved and see the rewards!"


Neuromuscular Research Partnership celebrates 10 years!

Since 2000, Muscular Dystrophy Canada, and the NRP partners (ALS Society of Canada and the Canadian Institutes of Health Research) have together invested $29 million to fund 65 principle investigators leading 108 cutting-edge research studies with the potential to move along the spectrum from basic science research to therapeutic treatments.

To mark this occasion, muscle.ca is featuring a compilation of researchers’ reports on highlights, progress and hope for the future. To read through the reports visit Research Updates.

Applications being accepted for the 2011 Neuromuscular Research Partnership

Muscular Dystrophy Canada is pleased to announce the call for applications for the 2011 Neuromuscular Research Partnership. This Partnership is a collaboration between Muscular Dystrophy Canada, ALS Society of Canada and the Canadian Institutes of Health Research (Institute of Musculoskeletal Health and Arthritis, Institute of Genetics, and the Institute of Neurosciences, Mental Health and Addiction).

Together, we seek to fund outstanding research in the following broad categories of research:

  • Basic research involving muscle or nerve biology relevant to neuromuscular disease.
  • Focused research directed toward an understanding of neuromuscular disease.
  • Applied research encompassing research designed specifically to translate promising research advances from basic research and focused research into pre-clinical and clinical investigations relevant to the treatment of neuromuscular disease, but not including drug trials.

For details, including information on how to apply, please visit our website.

Registration Deadline 2011-02-01
Application Deadline 2011-03-01
Anticipated Notice of Decision 2011-06-30
Funding Start Date 2011-10-01

Please contact marla.spiegel@mucle.ca with your questions.


Muscular Dystrophy Canada to participate in McMaster University's
Disability Awareness Day!

Muscular Dystrophy Canada will participate in McMaster University’s 3rd Annual Disability Awareness Day on Monday, February 7, 2011. The event will be held at the McMaster University Student Centre Atrium and CIBC Hall from 10 a.m. to 6:30 p.m.

The purpose of the event is to raise awareness about disability and to stimulate people to think about disability and people with disabilities in new ways. The day will feature planned activities that present the diversity and complexity of both ‘disability’ as a category and the lived experience of disability (but not limited to) physical, intellectual, sensory, learning and cognitive disability, mental health, chronic health conditions, visible and invisible disabilities.

Muscular Dystrophy Canada, along with other groups, will participate in various activities including information/education booths; media presentations; panel presentations and discussions; art, poetry and photography by people with disabilities; and an interactive display regarding disability language.

A disability performance event is planned to close out the day. If you would like to actively participate in this event - for example, by contributing art work, an information booth, or making a presentation – please contact tomlind@mcmaster.ca.

This event is open to the general public!


B-Boy Luca "Lazylegz" Patuelli named Muscular Dystrophy Canada Ambassador

Luca "Lazylegz" Patuelli performs at Muscular Dystrophy Canada’s 2008 Youth in Action Conference

In November 2010, Luca Patuelli was named a National Ambassador by Muscular Dystrophy Canada’s Board of Directors.

As an ambassador, Luca will help to enhance and broaden awareness of Muscular Dystrophy Canada’s mission, programs and voluntary networks through appearances, speeches and other participatory opportunities.

Luca has been a supporter of Muscular Dystrophy Canada’s mission for several years. In 2008, he performed at Muscular Dystrophy Canada’s first Youth in Action Conference. He wowed the audience with his unique break-dance style and his story.

Luca was born with Arthrogryposis (multiplex congenital), a rare muscle disorder that limits motion in the joints. This rare disorder can affect any part of the body; in Luca’s case it affects his legs. Luca does not let his disability slow him down. In 1999 at the age of 15, a knee surgery left Luca unable to pursue his passion - a career as a professional skateboarder. Luca’s friends took him to his first break-dance show/competition and the rest is history.

Not being able to do a lot of the moves his friends could do, Luca gradually developed his own unique style. In August 2010, Luca made it to the final stage of tryouts for "So You Think You Can Dance Canada."

In 2009, Luca graduated from Concordia University with a major in Marketing, and is now working on marketing himself and motivating others.

"It’s about taking the bad and making it good." – Luca "Lazylegz" Patuelli


Stokes International Donate $7,952.63 to Muscular Dystrophy Canada

David Mellor, President of Stokes International, presents Kevin Harrison, National Director of Corporate Giving and Catherine Sherrard, Chief Executive Officer of Muscular Dystrophy Canada with a cheque for $7,952.63.

The donation was made on behalf of Stokes International’s customers and employees and is part of a program initiated last year to help celebrate Stokes International’s 60th year in business. This is the second year Stokes has donated to Muscular Dystrophy Canada.

Stokes International manufactures and sells top-of-the-line uniforms, equipment, supplies and regalia.

Catherine Sherrard and Kevin Harrison accept a cheque on behalf of Muscular Dystrophy Canada at Stokes International's head office in Mississauga. David Mellor (right), President of Stoke International, says his company looks forward to "continuing to support Muscular Dystrophy Canada for many years to come."

2010 Walk for Muscular Dystrophy raised over $1 million!

And, we’re going to raise even more in 2011! In the coming weeks, muscle.ca will be updated with details about this year’s events. We’ve got a fabulous new online fundraising tool, a magnificent early bird contest (with a super cool prize, courtesy of Fairlane Group), and brilliant recognition gifts to thank participants and remind them of how much we appreciate their support of Canadians affected by neuromuscular disorders.

Stay tuned for more details!



Congratulations to the Dream a Dream 2010 Atlantic Fall Raffle winners!   Use Charitycar.ca to turn your junk car into cash for muscular dystrophy!

Bernice Dooley will enjoy a 5-star all-inclusive trip for two at Sandals Whitehouse European Village and Spa in Jamaica! Second prize winner, Wendy Guindon receives a $1,000 Maritime Travel Gift Card! Third prize winner, Hubert Williston receives a Roots 3-piece luggage set!

Congrats Bernice, Wendy and Hubert!!!

Thank you to everyone who participated in the Dream a Dream 2010 Atlantic Fall Raffle in support of muscular dystrophy. A special thank-you to all our families, Chapters and Fire Fighters, your support is truly appreciated. This year's raffle raised an amazing $27,000 to help fund our services, education and equipment programs.

 

Charitycar.ca is now accepting old vehicle donations on behalf of Muscular Dystrophy Canada.

There is no cost for vehicle processing – and 100% of the proceeds from your vehicle will go to Muscular Dystrophy Canada to help fulfill our mission. Once your donation has been processed you will receive a tax receipt for between $100 and $150 from Muscular Dystrophy Canada, depending on your car’s assessed value by Charitycar.ca.

For more information on donating your older vehicle, go to www.Charitycar.ca and be sure to indicate that you want the proceeds of your donation to go to Muscular Dystrophy Canada.



Move it! Tidbits

  • Oculopharyngeal Muscular Dystrophy Conference presented via Webinar to 130 people in Quebec. Three doctors specializing in muscular dystrophy research and treatments presented an information session via webinar to 130 people from Quebec, Montreal, Sherbrooke, and Saguenay on October 27, 2010. Dr. Bernard Brais is a neurologist, Dr. Denis Codère is an ophthalmologist and surgeon, and Dr. André Duranceau is a thoracic surgeon.

  • Muscular Dystrophy Canada provided over $468,000 in financial assistance to help clients purchase over 303 pieces of equipment worth over $1 million in the first half of fiscal 2010-2011. This information and much more is now available on muscle.ca in Muscular Dystrophy Canada’s Services Report. The report summarizes the services that Muscular Dystrophy Canada staff delivered nationwide from April 1 – Sept. 30, 2010, and provides highlights of specific activities that occurred in various regions. Click here to read the full report.


 


  • Check out Yazmine Laroche’s blog, Yazamataz! It’s about leadership and living with a neuromuscular disorder. Yazmine is Deputy Minister for Infrastructure Canada and a member of Muscular Dystrophy Canada’s Board of Directors since 2008.

  • Heading out to an event? Make sure to bring along some photo release forms. Individuals appearing in photos need to sign a photo release form. Photos shot in public places of crowds or groups do not require a photo release form. Photo release forms can be downloaded from the wiki (go to intranet files and click on forms).

  • Join the conversation! Become a fan of Muscular Dystrophy Canada on Facebook or follow us on Twitter! Our goal is to have 1,000 Facebook fans and 300 Twitter followers by March 1!

  • Send your comments or story ideas to moveit@muscle.ca – we want to hear from you! The deadline for for the March/April issue is Wednesday, March 2.


Average Visits per Day (October 2008 – December 2010)

The chart below shows the average number of visits to muscle.ca since we started tracking in October 2008. Visits-per-day is the most basic measure of how effectively we are at promoting our cause on the internet.


Recently in the News


Fire Fighters organize tree collection

Nelson Fire Fighters brave cold to help fight Muscular Dystrophy

Catch the Elves Run/Walk: Raising funds for muscular dystrophy

Catch me if you can

Booting up

Laser-guided cue opens "new world" to man with muscular dystrophy

Nine-year-old inspiration in the fight against muscular dystrophy

 

Muscular Dystrophy Canada is on Facebook Muscular Dystrophy Canada YouTubeTwitter MD Canada Muscular Dystrophy Canada uses Flickr

Muscular Dystrophy Canada

 

Send your stories, ideas and comments to moveit@muscle.ca
If you have any questions concerning this publication, please contact Berta Mascarenhas, National Manager, Marketing & Communications.
Associate Editor: Marie Clarke; Design & Layout: Lana Milley; Contributor: Marla Spiegel.
move it! is published bimonthly.
Linked sites are not part of the move it! newsletter and, therefore we are not responsible for the accuracy of the material published.