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November/December 2011    Volume 3, Issue 3

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

Quebec Region wins use of JACO arm

One deserving Muscular Dystrophy Canada Client in Quebec Region will be loaned the use of JACO.  JACO is a robotic arm designed to help those with upper body mobility limitations.  It is the “helping hand” that gives freedom and the ability to adapt to the world around you.

In September 2011, the Quebec region of Muscular Dystrophy Canada entered a contest through Radio-Canada on a show called « Un moment de vérité ».  Two volunteers (with no neuromuscular disorders) played a wheelchair basketball game in which they had to score three baskets within a set timeframe, and they won! This competition set the wheels in motion for the robotic arm, which has a value of $35,000, to be placed on loan with a Quebec client.

JACO’s multifunctional hand has three fingers that allow you to get yourself a glass of water, bring your dinner to the table, and even eat.  JACO assists users in regaining their independence, and the Quebec Region is ecstatic to be offering this robotic arm to one of their clients.  By the end of March 2012, the arm will be on loan, and JACO will allow users to take care of their children, stay at home longer and volunteer. Quebec region are working on proposals for private foundations to collect money to purchase more JACO arms, and in December they will organize webinars with Kinova Engineers (in English and French) to learn more about the JACO arm.

Kinova’s JACO arm

Watch Video "Kinova presents JACO"

Walk for Muscular Dystrophy Events Raise Over $1 Million

An amazing 55 Walk for Muscular Dystrophy events were held across the country this year raising over $1,075,000!

Muscular Dystrophy Canada would like to thank the Chapter groups, planning committees and volunteers for helping put together an amazing season of Walk for Muscular Dystrophy events. These events would not be possible without the dedicated people who offer their time and resources to make these events come together and provide such wonderful experiences. We would also like to thank all those who participated in and donated to an event as your generosity and support are integral to the fundraising efforts of Muscular Dystrophy Canada.

Each Walk for Muscular Dystrophy event attests to the power of communities and individuals working together for a common goal. Together, we have been able to connect across the nation to raise awareness and funds to combat neuromuscular disorders. Your efforts will truly help to enhance the lives of those affected by neuromuscular disorders.

Although the Walk for Muscular Dystrophy season has come to a close, there are already preparations beginning for the many events to be held next year. We hope to see you all at next year’s Walk for Muscular Dystrophy events helping to make muscles move!

To all those Early Birds who signed up for a Walk for Muscular Dystrophy event before the deadline, the draw for the TV prize will be held on November 30th. Get ready for your chance to win!



Scientists, Clients and Caregivers Gather For Neuromuscular Research Education Day

Dr. Christopher Pearson addresses the audience

On September 24, 2011, members of the Muscular Dystrophy Canada community gathered at Toronto Airport Marriott to learn and discuss the research being conducted in the fight against neuromuscular disorders. The passion and determination was evident from all the researchers working tirelessly against neuromuscular disorders. All welcomed questions from participants about their work, and many described their research spaces as open for visitors.

Five sessions were held throughout the day touching on various topics. Eight researchers and three individuals directly affected by a neuromuscular disorder shared their work with 105 people in attendance. Recordings of the presentations from Research Day are now available to view here.

Neuromuscular Research Day was a great success in bringing the work of researchers to life for all those present. Muscular Dystrophy Canada received great feedback from attendees. Our evaluation form garnered a high satisfaction rating from 93% of respondents. Participants described the best part of Research Day as “learning in detail about the tremendous strides being made in research. After this we can hope that something positive may happen during the lifetimes of those affected by MD disorders”; “Meeting new people and connecting with them about the important issues”; and “Being able to speak directly to the researchers.” Thank you to everyone who made this year’s Research Day an informative and interesting discussion forum.

Cambridge Professional Fire Fighters Association has Record Year with Boot Drive

Cambridge Professional Fire Fighters Association held their annual Boot Drive for Muscular Dystrophy on Saturday, September 24, 2011 at the Cambridge Centre. In collaboration with Scotiabank, this year they raised an incredible $26,525.47.

Along with Cambridge Fire Fighters and Scotiabank representatives, students in the Pre-Service Fire Program at Conestoga College came out to help collect donations. The Cambridge PFFA was also the recipient of a 2011 Danielle Campo Extra Mile Award for their continuous fundraising efforts and for increasing awareness of those living with neuromuscular disorders in their community. Thank you to everyone involved with this year’s Cambridge Boot Drive!

Cambridge Fire Fighters pose in front of their truck

The Dr. David Green Awards

The Dr. David Green Awards Dinner was held during the Annual General Meeting weekend on September 24, 2011. Many awards were presented to our deserving recipients by friends and fellow Muscular Dystrophy Canada supporters.

Please read full profiles and watch the slideshow of the 2011 National Award Winners.

National Award Winners posing alongside Ontario Award winners who received their awards the same night

Atlantic Family Retreat Sweet Success!

Muscular Dystrophy Canada Atlantic held their first ever Atlantic Family Retreat at Camp Tidnish during the weekend of September 9th-11th.  Staff were excited to host this event to provide families who are impacted by neuromuscular disorders an opportunity to share their experiences with each other, to learn about new treatments and supports available and most importantly to have some fun in a relaxed and beautiful, informal camp setting.

Thirteen families participated from Nova Scotia and New Brunswick.  Youth were able to take advantage of recreational activities such as boating, swimming, tie dying and organized games while family members took in educational and motivational talks on subjects including The Importance of Respiratory Care, Inclusive Recreation, and Registered Disability Savings Plan. A panel of experienced parents shared their advocacy efforts. The joint family recreation time was a big hit and the nightly “sing-a-longs” around the campfire with marshmallows and hot dogs were described as absolute highlights.

Here are just a few of the comments about the weekend...

"Thank you for such a wonderful weekend, we all had a blast and met some wonderful people.
It's so great joining with others who all have something in common and it is such a learning experience for everyone. I truly hope this becomes an annual event;
if it's in the works for next year, sign us up!"

"We did not expect such wonderful activities for the kids!
They were happy and occupied during the info sessions! Fantastic!"

"It is so important for families to hear stories of successful advocacy! Very motivational!"

Atlantic Region staff would like to thank all of the speakers and camp staff as well as Alex Peeler (photographer and videographer) for their contributions to the weekend.  Most importantly, thanks to the families for the opportunity to share in their weekend.  Your willingness to share your personal experiences with others and to lend your support when needed was inspirational.  Due to your level of engagement and your positive feedback, Muscular Dystrophy Canada is excited to announce that plans are in place to host the Second Annual Atlantic Family Retreat next summer!



Danielle "Doc" Peers Hoops Challenge

On Saturday, October 15, 2011, the Alberta Northern Lights Wheelchair Basketball Society and Muscular Dystrophy Canada partnered to hold the First Annual Danielle “Doc” Peers Hoops Challenge. Danielle is a role model and a mentor, on the court and off. There are few people like Doc. She is a friend to all, she is a consummate “get ‘er done” leader, and she has a heart of gold. Created to honour Danielle’s spirit and passion for equality for all, and the enormous contributions that she makes to her community, the Doc Peers Hoops Challenge was a head-to-head matchup between Doc’s Kids (12 Alberta Northern Lights wheelchair basketball players between the ages of 9 and 19) and Doc’s Warriors (a team of eight brave challengers consisting of six Fire Fighters, an RCMP officer and our Muscular Dystrophy Canada Board Chair Nancy Cumming). In a fast-paced, fun game of heart and skill, Doc’s Kids took no mercy on Doc’s Warriors soundly beating them 30-10 to earn the honour of having their name engraved on the trophy for year one. A total of $6000 was raised by this enthusiastic group – $3000 going to the Junior wheelchair basketball program and $3000 going to the Edmonton Walk for Muscular Dystrophy.

See more pictures from the event on Flickr.

Doc's Kids team member, Danielle Peers, Terri Tumack (Western region staff) and Nancy Cumming (Board Chair)

Nathan Ride for Hope

Bikes and Riders from the Nathan Ride for Hope

In 2010 Nathalie started the annual Nathan Ride for Hope Charity Poker Run after her son Nathan was diagnosed with Duchenne Muscular Dystrophy. Nathalie started this event with the hopes of generating awareness about the disease and to raise funds so that more research can be done. Nathalie hopes that a cure will be found within Nathan’s lifetime, and if not, she hopes that her efforts will give hope to other families with children that have been diagnosed with Duchenne Muscular Dystrophy.

Over 130 motorcycle riders participated in the National Capital Region event this year from various motorcycle clubs such as the National Memorial Motorcycle Riders, the Legion Motorcycle Riding Group, the UN NATO group, and the Canadian Army Veterans Motorcycle Unit. There were also over a dozen families in cars that participated in the ride along with about 50 volunteers. There was a dinner reception after the ride with a live band attended by over 250 supporters. The combined efforts of all the participants, the volunteers, and the organizers raised a total of over $11,000 for Muscular Dystrophy Canada’s research programs. Thank you to everyone involved with Nathan Ride for Hope!

Move it! Tidbits

  • Read a summary of all the research being supported by Muscular Dystrophy Canada in this year’s Research in the Works

  • Feedback Needed by November 21st!
    The Government is inviting stakeholders to comment on RDSPs to ensure that the plans are meeting the needs of Canadians with severe disabilities and their families. Muscular Dystrophy Canada is creating a submission. Everyone is welcome to send feedback to Marla Spiegel or submit your insights directly to the Government. Find out more from Department of Finance Canada.

  • Thank you to everyone who called in or sent in a pledge to the 46th Annual Labour Day Telethon!

  • In 2005, after their son Garrett was diagnosed with Duchenne Muscular Dystrophy, the Langille family started a new holiday tradition with the Halloween Howler. The Howler is popular family-fun community dance and silent auction that has become an event everyone in the community looks forward to attending and supporting. Each year the event raises upwards of $10,000. This year’s event was held October 28th. Thank you to the Langille Family and all of their dedicated friends and neighbors in the Rosalind, AB area for supporting those with neuromuscular disorders!


  • Many clients in the Atlantic and Quebec Regions have participated as medal bearers for Rick Hansen’s 25th Anniversary Relay. Congratulations to those who have participated!

  • The LINC Study
    Our organization is a member of Neurological Health Charities Canada, who is sponsoring "A snapshot in time: an in-depth survey of 3500 people living in Canada". This survey is the first part of a larger research study called the LINC Study, which is a national study to learn about people living with a neurological condition and its impact on their everyday lives. Please visit The LINC Study, or call 902-494-1699 or 1-855-462-6828 (toll-free), or email to learn more and see if you’re eligible to complete the LINC survey.

  • Rick Hansen Global Accessibility Map - The Rick Hansen Foundation has launched the Hansen Global Accessibility Map – an easy-to-use online ratings tool that offers the opportunity to submit and obtain reviews from a mobility, hearing and sight perspective, on accessibility of buildings and public services in communities around the world. The online tool is available here, where visitors are invited to create an account, and begin rating venues from a mobility, hearing, or sight perspective.

Chapter Chat

  • South Okanagan helped at Safeway’s August Barbeque where they met Pat Quinn (former coach of Canucks and Leafs) and he was made an honorary chapter member!
  • South Okanagan Chapter raised $3000 at the Annual DragonBoat Sprint Festival in Penticton.
  • South Okanagan will host a barbeque in November this year to thank Fire Fighters in Penticton for their support; they will also sell new pewter Christmas ornaments in November.
  • Greater Vancouver’s Annual Safeway Walk for Muscular Dystrophy was held on September 25, 2011. Of the $3000 total that was raised, the executive committee team, “The Might Muscles” raised $2000. Congratulations!
  • Entertainment books are finally here to order! Greater Vancouver Chapter will sell them for $46 each. Time to order yours now!
  • Look forward to Greater Vancouver’s upcoming Christmas Party. This year the party will be held in Surrey, BC on December 10, 2011 from 4 p.m. – 7 p.m. Look for further details in their upcoming newsletter.
  • The Fundy Chapter recently held their 13th Annual Auction for Muscular Dystrophy. They raised $6,491, a big thank you and congratulations to all involved.
  • Central NB Chapter – John Wood and his Auction Committee have organized the Sun Life Financial Dinner, Auction and Dance which was held at St. Vincent de Paul Hall in Oromocto, on November 5th.
  • South Eastern NB Mighty Drivers – The Annual Bowling Christmas Social will be held on December 4, 2011 from 1 p.m. - 4 p.m. at the Champlain Bowlarama Dieppe.
  • South Eastern NB Mighty Drivers and Prince Edward Island have decided to move to the new Leadership Committee model for Chapters.
  • All of the Atlantic Chapters are involved in the Christmas Ornament Sale and the Atlantic Fall Raffle.
  • Our Ontario Chapter groups have already started their Christmas ornaments sales! As always, a new pewter ornament is available this year. For more information or to purchase an ornament, please contact your local Chapter group.
  • Up next for Ontario Chapters is our Buck for Luck campaign which will be taking place in March. More details to come in the next moveit! edition!

Fire Fighter Dispatch

From the Island (PEI)
  • This past summer PEI Fire Fighters from North Rustico, Mt. Stewart, Georgetown, Borden-Carleton & Kinkora held their very successful boot drives for Muscular Dystrophy Canada raising a total of $11,347.
  • The East River Fire Fighters held their annual car wash that raised $563.
  • Fire Fighter Appreciation Day gets kids thinking and writing. Groups of school children throughout Manitoba wrote a pile of thank you letters to Fire Fighters in their respective communities to thank them for both the work they do to protect their communities and to thank them for supporting people affected by neuromuscular disorders.
  • At La Barriere School in St. Norbert, a classroom of grade 6 students presented their thank you cards to Winnipeg Fire Fighter Derek Balcaen. Derek visited the classroom on September 27, along with Rosalie Rasmussen, a young woman with muscular dystrophy. They spoke about Derek’s job as a Fire Fighter, but also about the time he volunteers for Muscular Dystrophy Canada. Rosalie explained how she benefits directly from volunteerism and community service, and why it is important to help in the community.
  • Elsewhere in the province, students at MacGregor School met up with a Fire Fighter from Portage la Prairie, and students from Brandon Manitoba got to chat with a member of their local department.
  • The 2011 Frédérick Duguay Bike Tour held in Quebec raised $45,000 for Muscular Dystrophy this past August. Frédérick Duguay was on hand to welcome the cyclists, including Fire Fighters, police officers, and business people, after their 420 km ride and seemed very proud of their accomplishments. Stéphane Marois, a Fire Fighter from Sherbrooke, decided to organize the bike tour nine years ago. Now a passionate cyclist, Sherbrooke gladly covers the 420 km to help the cause of Muscular Dystrophy Canada. Also in the group was Daniel Tétreault, a Fire Fighter for the City of St-Hyacinthe and a City of Montréal police officer, who expertly led the 23 cyclists along the whole route.


You're invited... so SAVE THESE DATES!


Living with a Disability Health and
Wellness Information Day



Muscular Dystrophy Canada & Children's Hospital of Eastern Ontario (CHEO)
Information Day

Thursday, November 10th, 2011


Friday, November 18th 2011

Get the details on all Upcoming Conferences and Workshops.

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