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Creating Accessibility

disabled-1274655_960_720Accessibility is a huge issue around the world, even for Canada. A survey conducted by the Angus Reid Institute, in partnership with the Rick Hansen Foundation states that:

“Canadians identified massive gaps between current and ideal levels of accessibility within their communities, with the biggest barriers being access to recreational opportunities, transportation around the community and access to private businesses.” (Angus Reid Institute and Rick Hansen Foundation, 2015)

guide-dogs-at-dogPACER Ideally when new buildings are built they should be following building codes, and accessibility guidelines, but sometimes details are forgotten or incomplete. Making sure new buildings are ready to welcome all patrons, as well as retrofitting older infrastructure can make a huge difference in our communities. Other times, creating accessibility is as easy as offering to read a menu at a restaurant, or making sure walk-ways are clear. The Government of Canada is currently listening closely to accessibility needs as they consult the public for the Canadian Disabilities Act, and along with the provinces and territories have laws that make sure accessibility is a priority for our communities.

Here are some things that would increase accessibility in our communities:

  • Providing closed captioning on videos and televisions
  • Wide doorways
  • Wide and clear hallways
  • Ramps with a smooth incline  – Companies go to the Stop Gap Foundation to have custom, portable, wooden ramps made. These ramps take down a huge barrier in allowing all customers the chance to get through the front door. Business improves when anyone can make a purchase.  Learn more about the Stop Gap Foundation and their great work here stopgap.ca
  • No lips or steps to get through doors or interior areas of the business space
  • Wireless payment systems and other devices
  • Lower countertop areas
  • Accessible change rooms that are always available for those who need them
  • Automatic doors
  • Handrails
  • Door handles instead of knobs
  • Lower volume for ambiance music
  • Accessible parking – large spaces with no curbs and extra no standing space.
  • Accessible washrooms with accessible sink, and adult changing tables and a lift if possible
  • Elevators/platform lifts
  • Flooring material that is not slippery
  • Salting/sanding during winter weather
  • Adequate lighting
  • Documents available in larger print and braille, or online with option to zoom in and out

 

Let us know the great accessibility features you’ve found in your city in the comments!

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Buck 4 Luck 2017 – Where to Donate

B4L-smallLooking to sign your name to a shamrock? Here is the list of where you can give a Buck 4 Luck and help make muscles move!

Make sure to share a photo of your shamrock with us on social media by using the hashtag #Buck4Luck and #shamrockselfie!

 

British Columbia - contact Ethan Clow, ethan.clow@muscle.ca 1-800-366-8166 ext 2106

Jolly Coachman Pub, Pitt Meadows

The Gillnetter Pub, Port Coquitlam

Doggy Six Grooming, Richmond

 

Alberta - contact Maxine Anderson, maxine.anderson@muscle.ca 1.800.661.9312

Toad n Turtle, Airdrie

Fionn MacCools, Edmonton  Gateway

Toad n Turtle, Calgary

The Old Bar, Stony Plain

Royal Canadian Legion Branch 271, St Albert

Sherwood Park Fire Department, Sherwood Park

Grande Prairie Fire Fighter Association, Grande Prairie

 

Saskatchewan - contact Maxine Anderson, maxine.anderson@muscle.ca 1.800.661.9312

Coming soon

 

Manitoba - contact Maxine Anderson, maxine.anderson@muscle.ca 1.800.661.9312

Brandon Fire Department

 

Ontario - contact Kerri Lachance, kerri.lachance@muscle.ca 1.877.850.8720

Coming soon

 

New Brunswick - contact Rebecca Bourbonnais, rebecca.bourbonnais@muscle.ca 1.800.884.6322 ext 4102

Dooly’s, Quispamsis

Grand Bay Pharmacy, Grand Bay/Westfield

 

Nova Scotia - contact Rebecca Bourbonnais, rebecca.bourbonnais@muscle.ca 1.800.884.6322 ext 4102

Valley Pharmasave, Middleton

Pharmasave, Rockingham Ridge

Amherst Cheverie Pharmasave, Amherst

Dartmouth Gate Guardian Drugs, Dartmouth

Crossroads Co-op, Parrsboro

Weymouth Valufood, Weymouth

Garwood Pub at Dalhousie University, Halifax

Foodland #9070, St. Peter’s

MacDonald’s Convenience Store, St. Andrews

R.G. Graves Valufoods, Bridgetown

Giant Tiger, Sackville

Gillis Home Hardware, Sydney

Harrison’s Home Hardware, Parrsboro

 

Prince Edward Island - contact Rebecca Bourbonnais, rebecca.bourbonnais@muscle.ca 1.800.884.6322 ext 4102

Main Street Pharmasave, Souris

Clows, Hampshire

 

Newfoundland and Labrador - contact Rebecca Bourbonnais, rebecca.bourbonnais@muscle.ca 1.800.884.6322 ext 4102

Grenfell Mem Co-op #176, Grenfell

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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.

When Ethen broke his leg and required care at home in 2015, Muscular Dystrophy Canada was there to provide us with a rental hospital bed. They also supported us earlier this year when Ethen fractured his other leg, advocating for him to be transferred to a rehabilitation hospital instead of being sent home again to recover.

Muscular Dystrophy Canada was there when we needed funding for a commode and a patient lift, and they were there when a kind family donated a homecare bed for Ethen.

We like to give back by participating in the Walk for Muscular Dystrophy with our extended families. Julie (Ethen’s mom) was a Walk for Muscular Dystrophy Ambassador in 2014, and Ethen and his friend, Blaine, produced a four-song CD in 2015. Their CD was sold at many Walk events across Ontario, with the proceeds going to Muscular Dystrophy Canada. They even appeared on television!

Ultimately, it is your support of Muscular Dystrophy Canada that helps to make all of this—the equipment, the emotional support, the advice and the friendship—possible. Your participation in the Walk events, your fundraising and your generous donations ensure that Muscular Dystrophy Canada can give us the most important gift: hope.

 

- The Edwards Family from Georgetown, Ontario

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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.

on-conf-possible-2Those who attended were very excited to hear research updates from Dr. Robin Parks, Dr. Jodi Warman, Dr. Rashmi Kothary and Dr. Ronald Cohn and enjoyed learning about some of the recent research advancements. Throughout the conference, personal and emotional stories were shared by various volunteers, clients, Fire Fighters and partners. A highlight of the afternoon was when Luca “Lazylegz” Patuelli asked 11 year old Kaleb to join him for a break dancing lesson.

The banquet opened with special guests being piped in by the Toronto Fire Pipes and Drums Band. Genuine and heartfelt speeches during the banquet were given by Alex Harold, Christina Massad and National Ambassador Danielle Campo-McLeod. Several of our dedicated volunteers and partners were also recognized with annual awards.

Thank you to all who attended and for making the day so memorable, and congratulations to our award winners.

Ontario Chapter of the Year Award
Ottawa Chapter

Ontario Dr. George Karpati Award
University of Ottawa Centre for Neuromuscular Disease

Ontario Fire Department of the Year
Sault Ste. Marie Professional Fire Fighters Association

Ontario Fire Fighter of the Year
Launie Fletcher

Danielle Campo Extra Mile Award was presented to:
Middlesex Centre Fire Department – Coldstream Station
Russell Fire Department
The Espanola Fire Fighters
Whitby Fire and Emergency Services
Ottawa Fire Services – District #7 Fire Fighters

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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.

 

What improvements were seen in the clinical trial?

In both the infant and child study (SMA type 1 and 2 respectively) the motor skills were better than those treated with placebo. At this point we have not seen all the specific numbers, but for example in the SMA type 2 study the children actually improved over their baseline function by about 4 points on a motor scale we use to measure function in children with SMA.  The placebo group declined by 2 points during the same 15 month time frame. It is very unusual for children with SMA to improve on this score as SMA is typically a disorder where patients decline in function over time.

 

How will the development of nusinersen continue now that the clinical trial showed a positive result?

All children on the trials have been moved over to open label extension studies, and the company has opened up a special access program so that all children with type 1 SMA  can get access to nusinersen free of charge.  Currently the investigative sites in Canada (Vancouver, London, Toronto, and Montréal) are taking referrals for SMA patients to get nusinersen.  We anticipate that the company Biogen Inc. will be applying soon to Health Canada for a Notice of Compliance for a new drug.

 

Could a clinical trial for nusinersen open for adults affected by SMA?

I think it would be unlikely to happen any time soon. The company will probably apply for a wide label for the drug, and thus a trial for adults may not be needed. In the case that Health Canada limits the label to a specific age group, then a trial in adults may be needed.

 

What does this mean for research into other neuromuscular disorder treatments?

This has definitely helped give some enthusiasm and hope for the whole neuromuscular community, and it specifically gives some validity to the use of AON, which have been under trial in Duchenne MD (Eteplirsen and Drisapersen) and in Myotonic dystrophy (Ionis).  However, it raises the question about how other medications can be tested in children with SMA now that an effective drug is on the market.  Will placebo trials be possible, will there be enough children willing or able to participate in new trials, how will regulatory agencies respond to new trial applications? These are all not clear right now.

 

What are your hopes for the future use of this drug in patients with SMA?

We hope that we get Health Canada approval for a new drug in an accelerated manner, and that a thoughtful label is applied.  Also we hope that a clear plan for coverage of the drug is established so that families do not have to pay or worry about access due to financial resources. Ideally this will be full government coverage, but other options will be important to explore such as managed access schemes.

 

Watch the CTV News feature video below, and read the accompanying article here.

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