News – Muscular Dystrophy Canada

Help families, like Danielle’s, get the answers and support they so desperately need.

Danielle has defied all odds throughout her life. As a world-record holding Paralympian, Danielle challenged herself to win a medal, and not only did she win one, but over the course of two Olympic games, she won seven. Danielle is a published book author and engages many as a motivational speaker at events nationwide. She’s a proud mom of five and has earned an honourary doctorate. Danielle also has spinal muscular atrophy (SMA).

When she was two years old, Danielle was diagnosed and her lifelong connection to Muscular Dystrophy Canada began.

Because of our donors, Muscular Dystrophy Canada has been able to stand shoulder to shoulder with Danielle and her family throughout every stage of her neuromuscular journey, from supporting them as they navigated through some difficult questions, helping to provide vital equipment and working together to ensure the systems around Danielle were set up to ensure her success.

Please make a gift today and help families, like Danielle’s, get the answers and support they so desperately need.

Donate now

“Not only did Muscular Dystrophy Canada provide emotional support to my family, but throughout my childhood they also provided support with equipment, advocacy, and navigating life with a neuromuscular disorder,” Danielle says. “Growing up, I had many questions: Would I be able to have kids? Would I pass this disorder on to my children? What would my prognosis look like? No matter what question or fear I had, I was always able to turn to Muscular Dystrophy Canada.”

Today, Danielle is thriving. But life isn’t always easy. Because receiving a neuromuscular diagnosis can be complex, Danielle received a new diagnosis recently. The good news is that this was possible because of our donors. Your investments ensured research continued to accelerate and change lives.

“Thanks to Muscular Dystrophy Canada’s donors, I have been able to finally get my official diagnosis of spinal muscular atrophy – lower extremities dominant (SMA-LED), after 10 years of genetic testing” Danielle says. “Thanks to this investment, I was also able to learn that my condition is genetic and there was a 50/50 chance it would be passed onto my children.”

Originally told she wouldn’t pass on her disorder, Danielle’s middle son, Samson was recently diagnosed with spinal muscular atrophy, just like his mom.

The path ahead for Danielle and Samson isn’t a straight line but is made easier because of Muscular Dystrophy Canada’s support, programs and services.

Our team is at the end of each phone call. We will answer every email, and we will help ensure Danielle, her family and everyone living with a neuromuscular disorder has every opportunity to meet their own goals, whatever they may be.

Donate today!

100 percent of Canada is now screening infants for spinal muscular atrophy, a potentially fatal disorder

Muscular Dystrophy Canada and partners deliver on goal outlined in Canada’s Rare Disease Strategy

Toronto, Ontario, Canada, August 20, 2024 – Muscular Dystrophy Canada is thrilled to announce that after three years of working with each Canadian province and territory, all babies born in Canada can now be tested for spinal muscular atrophy (SMA). This milestone means infants diagnosed with SMA, the most fatal genetic disorder in children under two years of age, can receive life-changing treatment before symptoms even develop. It also marks the first neuromuscular condition to be added to screening panels across the country.

“Early diagnosis and effective treatment are critical to achieving the best possible outcomes for babies born with this neuromuscular condition,” said Dr. Pranesh Chakraborty Chief of the Department of Pediatrics at Children’s Hospital of Eastern Ontario and Chair of the Department of Pediatrics at uOttawa’s Faculty of Medicine. “Historically, most infants and children with SMA would have been diagnosed only after they have developed weakness and respiratory difficulty, at a time when most of their motor neurons have been irretrievably lost. Now, instead of facing life-limiting disability and, in the most severe cases, a life expectancy of less than two years, babies affected by SMA every year in Canada shall be diagnosed within the first weeks of life allowing them to rapidly receive therapy and improved outcomes.”

In 2020, only Ontario and the Baffin region in Nunavut screened for SMA at birth. Today, regardless of where in Canada a child is born, they will receive the same screening; and, if SMA is diagnosed, the same healthcare, treatment and opportunity to thrive.

“I could not imagine what our life would look like if my daughter were not given genetic, SMA-testing at birth,” said Taylor Diakew, mother of a 2-year-old with SMA. “Today, thanks to her early diagnosis, and quick access to treatment, she is a happy, healthy little girl who does not exhibit any signs of SMA – she is walking, running, climbing, and talking like any child her age. Thanks to SMA newborn screening, she can live the best life possible.”

The addition of SMA to newborn screening panels in all provinces and territories breaks down barriers and inequities families face simply because of where they live. It also acknowledges that screening for rare genetic diseases and access to early care results in positive health outcomes and long-term cost benefits for everyone.

“It is a tremendous accomplishment to start improving early detection and prevention, one of the goals outlined in Canada’s Rare Disease Strategy. However, this success was only possible because of the willingness of provincial and territorial governments to work alongside Muscular Dystrophy Canada to add SMA to newborn screening. This is a significant step forward, and we hope it leads to the inclusion of other neuromuscular conditions on screening panels,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “We are grateful for the partnership with Novartis Pharmaceuticals Canada who helped us make this a reality across Canada and for every clinician, researcher, provincial laboratory lead, volunteer, donor, Canadian Fire Fighter, like minded organization, and government member who supported this project.”

“This initiative holds immense value for the entire Canadian neuromuscular and rare disease community, laying the groundwork for future transformative and life-changing initiatives,” said Dr. Homira Osman, VP of Research and Public Policy, Muscular Dystrophy Canada. “There are many progressive neuromuscular disorders where time is of the essence: early diagnosis and prompt access to treatments are critical drivers to achieving the best possible outcomes. Muscular Dystrophy Canada will now leverage the knowledge and findings gained from this initiative to ensure other neuromuscular disorders are included in newborn screening programs nationwide.”

– 30 –

ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well-funded research. To learn more about Muscular Dystrophy Canada, please explore our website or call our toll-free number at 1-800-567-2873.

FOR MORE INFORMATION CONTACT:

Homira Osman
Vice-President Research & Public Policy
Muscular Dystrophy Canada
Homira.Osman@muscle.ca
437-912-9037

YOU’RE MOVING RESEARCH FORWARD

Muscular Dystrophy Canada is the only dedicated source of funding for neuromuscular research in Canada. Because of donors, volunteers, Fire Fighters and incredible supporters, like you, we invested $900,000 into nine clinical and translational research projects through the Neuromuscular Research Grants Competition this year. Thanks to your generosity, we also invested $63,630 towards an innovative study led by Dr Gonorazky on Charcot-Marie-Tooth disease, bringing our research investment for this year closer to $1 million.

In recent years, neuromuscular research has undergone significant transformations, leading to changes in clinical standards, improved diagnoses and breakthroughs in treatment discovery. Continued investment in research is key to keeping and accelerating this momentum moving forward.

“We want to thank the clinicians and researchers on our Scientific Review Panel, as well our Lived Experience Readers who volunteered their time and expertise in selecting this year’s recipients.”

— Stacey Lintern, CEO,
Muscular Dystrophy Canada.

See the full announcement

UNWAVERING COMMITMENT: FIRE FIGHTERS AND MUSCULAR DYSTROPHY CANADA CELEBRATE 70TH ANNIVERSARY

Through boot drives and tolls on local roads, community barbeques,
rooftop campouts, car washes, stair climbs and raffles – you name it – more than 600 fire departments, locals and associations across our country work with Muscular Dystrophy Canada every year so they can give all neuromuscular disorders “the boot” in this lifetime.

Fire Fighters have hosted these fundraising events for 70 years to support people affected by neuromuscular disorders.

“When it’s Fire Fighters and MDC together, we’re a family, and we know they need our help. So, when it comes to fundraising, I say, give me a challenge, and I’ll give you my best,” said volunteer Fire Fighter with Middlesex County, Launie Fletcher. Launie has been fundraising with Muscular Dystrophy Canada for 40 years!

Fundraising events also provide Fire Fighters with an opportunity to meet Canadians affected by neuromuscular disorders and see how they’re helping transform lives.

City of Edmonton career Fire Fighter, Courtney Polson added, “Events are just so rewarding for everybody because we see the difference they make. With Muscular Dystrophy Canada, I’ve seen firsthand where the money goes – how it makes a difference in people’s lives.”

To learn more about our 70-year partnership with Fire Fighters or to make a gift of appreciation, visit FilltheBoot.ca.

Muscular Dystrophy Canada’s partnership with Fire Fighters started in
1954

Total amount raised
by Fire Fighters over
70 years:
$103,607,542

2023:
$2.5 million

2024 goal:
$3.2 million

LET’S PARTNER TO ACHIEVE EVEN MORE! TOGETHER, WE HAVE ACCOMPLISHED SO MUCH AND WE KNOW THERE IS MORE TO DO

At Muscular Dystrophy Canada we understand that every community is diverse in its needs and priorities.

Help shape your community’s priorities, set goals, and create important action plans that we can achieve together. We’re inviting people affected by neuromuscular disorders, family members, caregivers, Fire Fighters, donors, healthcare professionals, researchers, and supporters to tell us what is most
meaningful in your local community!

Register and join a town hall meeting near you. If you don’t see a location that is close to you… don’t worry we are only getting started. More communities will be added after these initial consultations are completed. Have questions? Contact us at community@muscle.ca.

Access the registration form and all key dates

BRINGING THE NEUROMUSCULAR COMMUNITY TOGETHER TO CONNECT, REST AND SHARE EXPERIENCES

Thanks to generous supporters, like you, Muscular Dystrophy Canada offers two types of retreats. Caregiver Retreats offer anyone taking care of someone affected by a neuromuscular disorder a relaxing weekend away. And Family Retreats bring the entire family together to meet other families from their area and enjoy various activities and entertainment.

“This retreat changed my life and allowed me to make many new connections. I won’t miss any future retreats. They are so important and life-changing for those of us who have loved ones that struggle with daily life.”

— 2023 Muscular Dystrophy Canada Caregiver Retreat attendee.

Upcoming Family Retreats:

Quebec: September 20-22 | Camp Papillon, Saint-Alphonse-Rodriguez
Ontario: September 20-22 | Camp Fire Circle, Rosseau
British Columbia: October 4-6 | Camp Shawnigan, Shawnigan Lake
Alberta: Date and location coming soon!

Upcoming Caregiver Retreat:

Ontario: October 18-20 | Ramada, Bellville

WALK & ROLL SEASON HAS OFFICIALLY STARTED

A huge thank you to everyone who participated in one of the 23 events this Spring. Whether you donated, volunteered, hosted your own event, or attended an event as a participant, THANK YOU for supporting the Walk & Roll for Muscular Dystrophy Canada and for helping to break down barriers for the neuromuscular community. And while we might be halfway through the season, there is still plenty of time to register for the Fall events.

Upcoming Walk and Roll’s include:

September 7 – Jonquiere, QC
September 8 – Belleville/Kingston, ON
September 22 – Calgary, AB & Vancouver Island, BC
September 29 – Toronto, ON

TBD:

Sherbrooke, QC
Surrey/Burnaby, BC
Grande Prairie, AB

At each Walk & Roll you’ll enjoy an amazing day filled with fun, community, and support for the neuromuscular community. Join us and help break down barriers for Canadians affected by neuromuscular disorders. Register today at WalkRollMDC.ca

Dr David Green Awards shines the spotlight on outstanding volunteers

Muscular Dystrophy Canada (MDC) is excited to announce the esteemed 2024 Dr David Green Award winners. In the past year, these amazing groups and individuals showed exceptional commitment to improving the lives of Canadians affected by neuromuscular disorders (NMD).

Volunteers have a huge impact on the entire neuromuscular community. Each year, volunteers from all areas of Canada with varying skills, jobs, talents and interests make MDC’s initiatives possible. They share their knowledge and creative ideas, give their time, contribute their experiences, and build positive connections within communities to advance advocacy efforts, push research forward, and deliver essential programs and services.

MDC is extremely grateful to these extraordinary people who are essential in breaking down barriers for the neuromuscular community.

2024 National Dr David Green Award Winners:

Caring Corporate Partner Award
Pfizer Canada
Distinction in Chapter Leadership Award
London Chapter
Dr David Green Impact Award
Sault Ste. Marie Professional Firefighters Association
Dr George Karpati Award for Researcher of the Year
Dr Jodi Warman Chardon
Dr Katie Manders Courage to Inspire Award
Danielle McLeod
Excellence in Service Delivery Award
The Neuromuscular Disease Network for Canada
Fire Department of the Year Award
Ajax Fire and Emergency Services
Fire Fighter of the Year Award
Sean Donovan
Fred Shaddick Community Spirit Award
Journey for Janice
Mary Ann Wickham Award for Volunteer of the Year
Dan Hamel
Outstanding Healthcare Partner Award
Dr Erin O’Ferrall
Outstanding Philanthropist Award
The D & B Atkins Charitable Gift Fund
Rising Clinician/Researcher Award
Dr Cam-Tu Émilie Nguyen
Leadership in Advocacy Award
Alfred Breton-Paré

Discover the full list of
2024 National and Provincial award winners

New locations added to 2024 Walk and Roll for Muscular Dystrophy Canada

FOR IMMEDIATE RELEASE

Toronto, Ontario – Spirits are high as Canadians from coast to coast to coast get ready to walk and roll starting May 11 to raise funds and break down barriers in support of their friends, families and neighbours affected by neuromuscular disorders (NMDs).

The Walk and Roll for Muscular Dystrophy Canada (MDC) takes place in more than 30 communities across the country from May to October to raise critical funds to break down barriers for the neuromuscular disorder community, and ultimately find cures. Due to interest, events in Burnaby and Surrey, BC have been combined into one bigger celebration and new events have been added in Grande Prairie, AB and Sherbrooke, QC.

The goal is to raise $1.3 million.

“The Walk and Roll for MDC is a critical fundraising event. The funds raised by participants are invested in ground-breaking research, ensuring Canada is prepared to provide access to new life-changing treatments, while also filling the immediate need for treatment and care options,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

Dr Jodi Warman Chardon, Clinical Scientist in the Department of Medicine at the Ottawa Hospital added, “For many disorders, there isn’t a treatment yet, but MDC-funded research gives people true hope. We’ve made incredible discoveries in the last few years, and they’re just going to accelerate.”

Lintern continued, “Walk and Roll for MDC fundraising ensures that when someone needs vital equipment to help live their best life – or even save their life – they won’t have to struggle. Every dollar raised helps MDC deliver a variety of services for all Canadians while also raising the neuromuscular community’s voice and improving access to key decision-makers who can address gaps in the healthcare system.”

But Walk & Roll for MDC is more than a fundraiser. It is a fully accessible community event that is fun for families, friends, businesses and colleagues. It’s a chance for individuals and families to break down barriers together, connect with others who have similar experiences and share their learnings and words of support. It’s a chance for Fire Fighters to connect with the families they help all year long and for members of the research community to hear about individuals who have accessed treatment or therapies.

When you register or donate to the Walk and Roll for MDC, you are breaking down barriers for thousands of Canadians right now – while also giving hope to future generations. For more information on locations, to donate or register visit, WalkRollMDC.ca.

– 30 –

ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those affected by neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for cures through well-funded research. To learn more about Muscular Dystrophy Canada, visit muscle.ca or call 1-800-567-2873.

FOR MORE INFORMATION CONTACT:

Heather Rice
Director, Marketing & Communications
Heather.Rice@muscle.ca
902-440-3714

MDC AND PARTNERS LAUNCH CENTRAL HUB FOR NMD SPECIALISTS – A CANADIAN FIRST!

Have you ever looked for a healthcare professional who specializes in the specific neuromuscular disorder (NMD) affecting you or a loved one? If your response is ‘yes’, you share a common experience with many Canadians who frequently seek healthcare professionals experienced in their specific condition. In fact, the second most frequently asked question to MDC’s Research Hotline in 2023 was about finding physiotherapists, occupational therapists, physical medicine and rehabilitation physicians, speech-language pathologists, surgeons, and respirologists with expertise in neuromuscular conditions. This valuable information wasn’t centralized in one location—until now!

For the first time ever all healthcare professionals in neurology or other disciplines focused on NMDs in Canada can connect. The new Canadian Neuromuscular Community of Practice not only helps identify healthcare professionals involved in neuromuscular care, but it also makes it easy for all professionals to learn together, exchange information and broaden their overall knowledge of NMDs!

THANKS TO MDC’S DONORS AND PARTNERS, THE COMMUNITY OF PRACTICE WILL BREAK DOWN BARRIERS FOR THE NMD COMMUNITY BY:

	WHICH WILL …
• Making it easy to share information on NMDs	• Provide timely references to appropriate specialists
• Continually training and educating	• Improve Canadians access to reliable information
• Opening access for peer-to-peer support	• Strengthen the level of NMD expertise in the Canadian medical community
• Allowing for collective problem solving and faster access to experts for advice	• Reduce the time it takes to receive effective care
• Providing access to more NMD experiences	• Improve access to clinical trials in Canada
• Improving Canadian clinical trial readiness and access

Are you a client looking for neuromuscular disorder information or specialists? Are you a healthcare provider looking to join the community of practice or share information? The Canadian Neuromuscular Community of Practice team is happy to help! Contact research@muscle.ca!

The community of healthcare professionals supporting the Canadian Neuromuscular Community of Practice are (pictured from left to right) Dr Warman-Chardon, Dr Lochmüller, Dr Gagnon, Dr Campbell, Dr Schellenberg, Dr Mah, Dr O’Connell, Dr Rodrigue and Dr Plamondon.