MDC IS HERE FOR YOU!

Whether you live on the east coast, the west coast, the Prairies or central Canada, MDC is here to support you. We have Service Specialists across the country who will be happy to work alongside you, ensuring you have the information and support you need. Meet Ryanne, our Service Specialist in Atlantic Canada.

“As a Service Specialist I am able to work directly with clients and their families to support them in achieving a wide range of goals and navigation of the healthcare system. When we are able to provide funding towards an essential piece of equipment, we are not only supporting our clients with the financial strain that accompanies living with a neuromuscular disorder, but we are also providing hope for the possibilities of what they will accomplish with this equipment. Being able to provide this kind of support and making positive connections with our families truly is my favorite part about working at MDC.”

“The majority of the disorders we cover are so rare that it can make you feel isolated. It is so important for our clients to understand that is why MDC is here, to ensure you do not have to navigate living with a neuromuscular disorder alone.”

Are you or someone you know living with a neuromuscular disorder? MDC has a wide range of programs and services designed to meet you where you are. Whether it is information on your disorder, helping you with accommodation needs at work or school, navigating the healthcare system, housing or financial issues, or helping you secure equipment – we’re here to help. Visit muscle.ca/services-support/need-help/ to find a Service Specialist near you, or call us at 1-800-567-2873.

Muscular Dystrophy Canada, AccessNow teaming up to make travel more accessible for people with disabilities

Toronto, Ontario – Traveling can be a very stressful event for people using mobility devices and can negatively impact their independence and safety. Far too often, we know critical mobility devices are being damaged in transit impacting a person’s mobility. Muscular Dystrophy Canada (MDC) and AccessNow are partnering to equip travellers with the information they need to plan and advocate for safe and comfortable travel.

Travel inequity is something AccessNow founder and disability activist, Maayan Ziv, has experienced herself.

“It is so important for people with disabilities to be aware and knowledgeable of their rights. Too often there are excuses for why we can’t be accommodated. Knowing your rights is half the battle,” said Ziv. “These incidents continue to happen, so until legislation is passed by the Canadian government, we have to equip people with the information and resources they need to avoid as many problems as possible.”

“We’ve heard far too many accounts from our clients and others about inequitable travel experiences,” said Stacey Lintern, CEO, Muscular Dystrophy Canada. “We are committed to better understanding the barriers and working with AccessNow, people with disabilities, the travel industry, government and other stakeholders to address these issues so people traveling with mobility devices have an equitable, positive and safe travel experience. Currently, Canada does not track this information so our first step is to gather data.”

This lack of information makes it difficult for people with disabilities to prepare and make informed travel plans. MDC and AccessNow are committed to working with people with disabilities to gather data, and then develop an Accessible Travel Toolkit that can be used as a guide for persons with disabilities to use to ensure positive travel experience.

We want to hear from you. We’re collecting travel experiences to create an Accessible Travel Toolkit to address the inequities people with mobility devices face when travelling.

Have your voice heard, complete the survey here

Break down barriers for people like Christina today!

Christina was twelve years old when she started to experience weakness in her legs. She struggled to get up off the floor and just climbing stairs became very hard. Sometimes, her legs would give out entirely.

As an active and energetic youth who was involved in many sports, Christina kept making excuses for her sudden change in abilities. “I’m just being clumsy,” or “My legs are just not strong enough”, she said.
As her muscle weakness continued to progress, Christina was referred to a specialist. After several tests and visits, she and her family received life altering news.

Christina was diagnosed with Limb-Girdle muscular dystrophy.

Finally, Christina and her family had the answers they so desperately needed. Initially relieved to finally have an explanation for her change in ability, her diagnosis led to many more questions— questions that no one seemed to have the answers to.

“My parents and I had never heard of neuromuscular disorders before,” she says. “This was a new world to us. There were a lot of questions and tests and doctors weren’t able to give us clear information about what this would mean for me going forward. It was hard to get answers to these really important questions.”

We need your support now to ensure people like Christina and her family have access to the resources they need. Someone to answer questions and to act as a guide along the way. Your gift will help break down barriers.

When a Canadian is diagnosed with a neuromuscular disorder, we know they will need a lot of support and services. But the systems around us – provincial healthcare, private insurance, and government policy – aren’t set up to give that kind of full support. These systems are also difficult for people to navigate. So that’s why we’re here – to fill in the healthcare gaps and help people find their way through these systems.

MDC has a full spectrum of programs, services, and supports for the thousands of Canadians of all ages living with a neuromuscular disorder. Plus, we invest in transformative research to work towards more answers, therapies, and hopefully, potential cures.

Please consider becoming a monthly donor today. Monthly donations provide ongoing support, allowing MDC to be nimble and respond to immediate and urgent priorities – like the needs of our clients and emerging, promising research.

Donate Today!

While Christina still doesn’t have all the answers to her questions, she knows that MDC is with her every step of the way and that research plays an important role in her quality of life. Christina emphasizes that even without a cure, the diagnosis itself was crucial.

“As hard as the diagnosis may be, education is one of the most important pieces,” she says. “It is a big step in accepting your diagnosis and leading the best life possible. You will have to advocate for yourself, and being informed is one of the best ways you can do that!”

Please renew your commitment to MDC today by making a monthly gift. Your support helps provide Canadians affected by neuromuscular disorders with answers to their most important questions. By making a gift today, you will provide access to the critical information they need to make informed decisions about their health.

Donors like you make MDC’s support of individuals and families possible. Your generosity today will help eliminate the barriers that keep Canadians affected by neuromuscular disorders from reaching their full potential.

Today, at 35 years old, Christina’s neuromuscular disorder plays a big part in how she moves and operates every single day, but it doesn’t stop her from living her best life. As a self-described social-butterfly who enjoys travelling and going to concerts, Christina credits MDC with helping her have such a positive outlook.

“MDC has played a very important role in who I am today. It has given me the tools to connect with people that are affected like me,” she says. “It has educated me and has made me comfortable in my own skin”.

With your ongoing support, we can help other people affected by neuromuscular disorders achieve their own goals and live their best lives, too.

With your help, we can accomplish incredible things!

Donate Today!

Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project

Muscular Dystrophy Canada (MDC) is proud to announce it has joined Clinical Trials Quebec’s Personalized Support Service pilot project.

The new program, developed by Clinical Trials Quebec and powered by CATALIS Quebec, is a free, bilingual resource designed to offer patients and caregivers in Quebec the possibility of finding clinical trials meeting their criteria. The service’s goal is to provide patients and their loved ones with accurate and verified information so they can initiate or facilitate discussions with their medical team about participating in a clinical trial.

Learn more “Muscular Dystrophy Canada Is Participating in Clinical Trials Quebec’s Pilot Project”

Additions to the Equipment Program Funding!

Additions to the Equipment Program Funding!

Because of donors, like you, MDC has added a substantial list of Assistive Technology to its Equipment funding list.

Assistive technology helps people affected by neuromuscular disorders (NMDs) to improve their health, safety, independence, and t increase their participation in education, the workforce and their community. These devices include; smart watch or wearables for fall detection and medical alert, communication devices, Robotic arm or eating device, Smart door locks and medication dispensers to name a few!

Learn more “Additions to the Equipment Program Funding!”

You can bring people together, even when we have to stay apart

Muscular Dystrophy Canada (MDC) is extremely fortunate to have your support. We are truly grateful that even during these challenging times, together we are able to support the thousands of Canadians impacted by neuromuscular disorders to live their best lives. While at the same time work relentlessly to search for cures and ensure that the neuromuscular community has access to the right diagnosis’, treatments and therapies.

Because of you, we are able to respond to the thousands of requests for support from our client’s and their families, the neuromuscular research community and health care professional’s each and every day.

Canadians with rare disorders, like Susan Jahnke, are extremely isolated during this pandemic. Your support today, can help them create connections.
As you know, living with a neuromuscular disorder (NMD) has its challenges. Add in a global pandemic and it opens up a whole new set of obstacles. We need your support to ensure individuals, like Susan Jahnke, continue to get the support they need during these challenging times. Susan recently shared with us how difficult having a rare NMD has been this past year.

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“I have a rare neuromuscular disorder that most people understandably haven't heard of, congenital fibre type disproportion. I have good days where I don't feel too bad, and don't think about my disability much - but I haven't had days like that during the pandemic. I'm confronted by being vulnerable every time I read the news or try to plan even a very limited outing. The reminder of how susceptible I am to the complications of COVID-19 is inescapable.

I miss seeing my friends, my mum and my brother, but the hardest part for me has been the tough choices my family had to make. My stepdaughter is in high school, and trying to balance keeping me safe, and keeping her life as normal as possible with her education and work, has meant that she's spending most of her time with her other parent. This has been such a painful balancing act.”

Your support today will mean that people like Susan won’t have to go through this difficult time alone. Your donation will ensure they can access the right services and supports to remove some of the many challenges they face. Together, we can ensure our Service Specialists across Canada are only a phone call away, equipped to work with each and every client and their families to break down barriers and alleviate frustrations.

Susan continued by sharing, “I also have to choose between getting the medical and healthcare I need, and risking COVID-19 exposure. Which is more important? It's such a hard thing to figure out, and my general health has really been suffering. I'm glad I'm able to stay in contact with my general practitioner over the telephone, but I'm missing out on critical care like physiotherapy and seeing specialists. One silver lining of the pandemic is how much it's highlighted the need for connection and I try to find new ways of reaching out, even on the hard days.”

You can keep Service Specialists, like Courtney, just a phone call away for Canadians needing support.
Thanks to you, Susan can connect with friends in the neuromuscular community through virtual network meetings or pick up the phone and call an MDC Service Specialist.

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People across the country affected by neuromuscular disorders have experienced similar challenges. Challenges no one should have to go through alone. That’s why MDC is so fortunate to have supporters, like you, who recognize the importance of providing opportunities for connection – whether that’s bringing individuals together virtually, or ensuring they have someone like me to reach out to for support,” shared Courtney Stearns, MDC Service Specialist.

Like you, MDC is dedicated to being there for all Canadians affected by neuromuscular disorders. Your generous support makes it possible for Canadians to connect and support each other virtually. And, will mean investments to continue the research momentum we are seeing in Canada. Donors like you make the funding of these incredible research projects go from an idea to action. Please consider making another donation today to move more research projects forward.

I hope we can count on you to continue your support. Your generosity fuels our mission, passion, and hope for a future with cures for neuromuscular disorders. You make an incredible difference.

Warm regards,
Stacey Lintern
CEO, Muscular Dystrophy Canada

P.S. Your donations have funded incredible projects such as a research hotline to answer critical questions from the NMD community, a virtual clinical care program to support home-ventilation, a partnership to make nation-wide newborn screening for SMA a reality and evidence-based webinars to share timely information with our national community. Please consider making a donation today to propel even more critical initiatives forward.

Your Impact on the Neuromuscular Community in 2020 was Profound

Welcome to 2021. I think it’s safe to say we’re all looking forward to the fresh start and renewed possibilities that this year will bring.

I want to take this opportunity to thank you for your support of the Canadian neuromuscular community in 2020. It was a challenging year for all, but your support directly impacted thousands of families and individuals across the country. Your donations funded access to treatments, programs and services and ground-breaking research.

For instance, you’re helping ensure early screening and treatment is available regardless of where you live. Thanks to the support of donors like you, babies and families across the country are a step closer to early diagnosis and treatment. We’re very excited to embark on a nation-wide newborn screening collaboration in 2021 to fuel the goal of making newborn screening for spinal muscular atrophy (SMA) a reality.

Also because of you, individuals affected by neuromuscular disorders stayed connected with their community, and were provided knowledgeable advice from experts in the health and medical fields during the pandemic. Your support allowed us to offer network meetings and educational webinars, virtually, so individuals could participate from the safety of their homes.

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Donors, like you, also played a vital role in keeping families together over the holidays. A research project you funded, A Virtual Transition Intervention for Children and Adults Transitioning To Home Ventilation, brought complex ventilator support into homes virtually. Individuals requiring ventilators to help with breathing make frequent visits to hospitals for specialized care and to ensure their equipment is working properly. This year, given these individuals are at a high risk for respiratory illness it was more important than ever that they stay at home with close family and friends. Thanks to your support of this research project, a virtual support program was piloted to bring medical experts into the homes of these individuals, reducing the need for hospital visits and possible exposure to COVID.

When we work together, we can truly accomplish incredible things.

That’s why I’m reaching out to you today. Will you renew your commitment to the neuromuscular community in 2021 by making a donation to MDC? Your gift will mean more investments in research, life-changing partnerships and continued support for individuals and families regardless of where they live.

The beginning of a new year is also the perfect time to become a monthly donor. Monthly donations support long-term projects and initiatives. They keep vital programs and services going all year long and ensure that critical advocacy efforts can continue to make positive changes for our community. The pandemic has underscored the vital importance of each and every donor and a sustainable monthly gift provides certainty for our ongoing work.

I know with your renewed support, we can continue to make meaningful changes, invest in research and form valuable partnerships that support Canadians affected by neuromuscular disorders.

Partnerships, such as the one with Thames Valley Neuromuscular Clinic where a pilot program is helping pediatric patients and their families make informed decisions throughout the care journey to alleviate some of the fear and stress these parents often experience. Your donations are also behind our Systems Navigation program, which helps Canadians with all areas of their non-medical needs. This past year, your gifts ensured MDC was able to continue funding critical equipment for individuals impacted by a neuromuscular disorder despite a drastic reduction in fundraising revenue.

MDC is the only national charity that supports Canadians with a wide range of neuromuscular disorders across the country, but we can’t do it without you. The impact you are having on the neuromuscular community is profound.

I hope we can count on you to renew your support today by making a donation.

Again, thank you for your support in 2020 and I look forward to working with you to continue changing lives in 2021. Because, like us, I know you too are ignited by passion and fuelled by hope.

Warm regards,
Stacey Lintern
CEO, Muscular Dystrophy Canada

P.S. Our new year appeal is one of our most important. Donations from supportive Canadians like you are put to work right away to support families and to fund research. While hope is renewed with the recent COVID vaccine, charities like ours continue to be impacted by its effect on our traditional fundraising activities and the economic realities for so many. We hope you can continue your support for 2021.

Double Your Impact Today

Have you ever heard of Giant Axonal Neuropathy (GAN)? Probably not. It’s a really rare neuromuscular disorder.

Hi! My name is Jordan and I’m 9-years old. When I was three and a half, a doctor told me I had GAN. My family had no idea what this meant. But the doctor told us that my nervous system is slower and doesn’t work as well as other kids’.

When I was little, I had trouble standing up and walking. At first, my parents thought I was just clumsy. I don’t remember this very well, but my mom says getting my diagnosis was like a never-ending road.

It took two whole years to figure out what was happening to me. When they finally found out about my disorder, my mom says it felt like she was kicked in the gut.

If you give a gift today, scientists can find out more about rare disorders to help people, like me. And today, your gift will go two times as far because a generous donor has agreed to match all gifts to my letter up to $25,000.

Did you know there are over 160 different kinds of neuromuscular disorders? That’s a lot. I have one of the really rare types. And there are lots of other people with different rare types too! Thankfully MDC is here to help people no matter what type they have!

Will you give a gift today so families like mine can get the help they need?

When I was 4-years-old, I needed a walker. Then when I turned five, I got my first wheelchair. Later, MDC helped me get a cool new power wheelchair. I’m really lucky, because I have donors, like you, to help me. But there are a lot of other people with rare disorders who need help, too.

It’s great that we know what my disorder is so that I can get the help I need. Many kids aren’t able to get diagnosed.

My disorder never stops me from having fun! I always wanted to learn how to dance so my mom signed me up for dance classes. She didn’t want to wait because one day I might be in my wheelchair full-time and dance classes would be very different.

Sometimes, my family needs help. If I need a new wheelchair or something else to help me, my mom just picks up the phone and calls MDC. Sometimes she talks to them for a long time, but she always seems happy.

Donors like you help make moms and dads feel happy, and less angry and sad. Right now, because of a special donor, your gift will help even more people! Will you give a gift today?

There are so many different types of disorders. But everyone should be able to get the help they need! MDC supports research, advocacy and helps families like mine get support and equipment—like my walker and wheelchair! When you donate to MDC, it really helps. We are so lucky to have you.

By giving a gift, you give me and families all over Canada HOPE for the future. I’m counting on you to give a generous gift today so you can help others live their best life.

Thank you for helping kids like me keep on dancing!

Jordan Gagnon

P.S. A generous donor has agreed to match the gifts from my letter! How awesome is that? They will match up to $25,000. Which means we can help so many other families. MDC supports research for treatments and earlier diagnosis and supports families impacted by ALL neuromuscular disorders, even the really rare ones—like mine!

MDC Urgently Needs Your Help

Dear Friend,

I truly hope this letter finds you and your loved ones safe and well during these uncertain times.

I am reaching out to request your support. As a result of COVID-19, Muscular Dystrophy Canada (MDC) has experienced a significant decrease in our fundraising revenue. As an organization that does not receive government funding, MDC relies on generous donors and supporters, like you, to meet the diverse and ever-changing needs of our clients.

Your support has enabled MDC to deliver its critical programs and services, like our equipment funding program, to thousands of clients across Canada for over 66 years. To ensure the safety of all, we have had to make the difficult decision to cancel and or postpone in-person fundraising events. As a result, MDC has experienced a decrease in revenue by over 60 per cent in our first quarter.

Therefore, we’ve had to decrease funding for our equipment program by 40 per cent meaning fewer clients are getting what they need. Our clients need us now more than ever as they have limited resources and are coping with issues related to COVID-19.

That’s why we’re hoping you will consider making a special donation today, if you can.

One such client who needs help is Courtney White. Courtney is a single mom of three children. Her two sons have Duchenne Muscular Dystrophy, and she desperately needs a bathroom lift for her home. She shared with us that, “This pandemic has been incredibly hard for our

Harley and Ayden, with their mom Courtney and sister Keira, need your support to access critical, life-changing equipment.
family. Right now, I have to lift my oldest son, Harley, in and out of the bathroom. He weighs significantly more than me. Having a ceiling lift from the bedroom to the bathroom would mean more independence for the boys, less physical stress on me and more time to spend together as a family. But, due to COVID-19, funding has been delayed significantly.”

Sadly, the crisis is far from over. You can help us continue to fund critical equipment for people impacted by neuromuscular disorders. We urgently need your support. If you are able, please consider donating today.

MDC has almost 100 people waiting for critical equipment. As you may know, often government doesn’t fund or fully cover the high costs of essential equipment like wheelchairs, ramps, lifts and respiratory aids. For some this means not being able to live in their home safely. For others, like Courtney’s family, it means emotional and financial strain in addition to health and safety concerns for caregivers.

Courtney also shared how thankful she is for the support that donors make possible.

“MDC always does everything they can to help us. For a single parent in this situation, securing financial support for equipment would take a huge weight off my shoulders, both literally and figuratively. Without you, I can’t get the equipment I need for my sons.”

If you are in a position to donate, I hope you will consider doing so today. You will be helping Canadians impacted by neuromuscular disorders access the critical equipment and support they need to live their best lives.

Thank you for being there when we need you most and continuing to support those impacted by neuromuscular disorders. I hope you have been safe and healthy during these uncertain times. If you have been impacted by COVID-19, you are in our thoughts.

With deepest gratitude,

Stacey Lintern
Interim CEO
Muscular Dystrophy Canada

P.S. At a time when our ability to raise funds to support the neuromuscular community has been diminished, we are experiencing a significant increase in requests for our services. You have MDC’s commitment that we’ll continue to do everything we can to support our clients and their families. But, in this period of uncertainty, we really need your help.

New Partnership Offers Access to Shared Decision Making Support in Ontario

New partnership offers access to shared decision making support for paediatric clients and their families in Ontario

For Immediate Release – June 23, 2020

Ontario, Canada – Muscular Dystrophy Canada (MDC), Children’s Hospital at London Health Sciences Centre (LHSC), and Children’s Health Foundation have entered into a partnership to offer a pilot project providing access to an innovative service that helps paediatric patients and their families make informed decisions throughout their care journey. Through this partnership, Ontario-based MDC clients up to age 18 and their parents and caregivers will have access to virtual Shared Decision Making coaching from Children’s Hospital via Ontario Telemedicine Network (OTN) Technology.

Shared Decision Making is the process where health professionals and patients collaborate on medical decision-making with a more structured method that takes into account both the best evidence and patient values. Health-related decisions can affect the overall well-being and quality of life of both the patient and their family members, and Shared Decision Making has been shown to reduce these psychosocial stressors. The decision coaching provided by Children’s Hospital at LHSC is particularly innovative because it involves unbiased decision support from outside the patient’s circle of care, filling a unique gap that is present in models where only practitioners are directly involved in the decision coaching. For children and youth with neuromuscular disorders and their families, this innovative model becomes all the more valuable as there are many challenging medical and non-medical decisions that must be made over a patient’s health-care journey.

“We are so excited about this collaborative partnership and the benefits our Ontario clients will gain from the Shared Decision Making program. Having support from a Decision Coach will help alleviate some of the fear, stress and pressure parents of children with neuromuscular disorders often experience,” says Stacey Lintern, Interim CEO, Muscular Dystrophy Canada. “This program will also support clients and families in gaining knowledge, evaluating benefits and drawbacks and clarifying priorities which are all integral to a comprehensive approach to making challenging medical decisions. MDC Service Specialists are happy to be able to offer this program as an additional resource to clients as they work with them to navigate and access critical supports.”

The Shared Decision Making partnership is in line with MDC’s commitment to client and family-centred care. MDC currently takes a client and family-centred approach to delivering its mission across Canada by offering a Systems Navigation program, which provides critical support not only in ensuring clients have access to the right resources but also by playing a key role in providing education, developing networks and connections, working in partnership to address barriers and share resources, enhancing life skills and self-coping strategies and embracing inclusion. The Shared Decision Making program includes education, tools, strategies and information. The partnership will provide MDC clients with a seamless process, allowing them to access the right resources at the right time.

“We are incredibly pleased to be able to partner with Muscular Dystrophy Canada to extend our decision coaching service to other patients and families across Ontario,” says Dr. Craig Campbell, Interim Chair of Paediatrics at Children’s Hospital at LHSC. “The Children’s Hospital team, with the support of our Children’s Health Foundation, has been able to develop a unique expertise in this area over the last two-years, and engaging in this new partnership is a rewarding recognition of that. We look forward to furthering our support of Ontario patients and families as they make important care decisions about their child’s neuromuscular disorder.”

The province-wide pilot project aims to collect data that will demonstrate the need for broader investment into a systemic-approach to the availability of decision coaching for all patients and families impacted by neuromuscular disorders across Canada.

Access support now.

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ABOUT MUSCULAR DYSTROPHY CANADA

Muscular Dystrophy Canada’s mission is to enhance the lives of those impacted 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 visit  www.muscle.ca  or call our toll-free number at 1-800-567-2873.

ABOUT LONDON HEALTH SCIENCES CENTRE

London Health Sciences Centre has been at the forefront of medicine in Canada for 145 years and offers the broadest range of specialized clinical services in Ontario. Building on the traditions of its founding hospitals to provide compassionate care in an academic teaching setting, London Health Sciences Centre is home to Children’s Hospital, University Hospital, Victoria Hospital, the Kidney Care Centre, two family medical centres, and two research institutes – Children’s Health Research Institute and Lawson Health Research Institute. As a leader in medical discovery and health research, London Health Sciences Centre has a history of over 70 international and national firsts and attracts top clinicians and researchers from around the world. As a regional referral centre, London Health Sciences Centre cares for the most medically complex patients including critically injured adults and children in southwestern Ontario and beyond. The hospital’s nearly 15,000 staff, physicians, students and volunteers provide care for more than one million patient visits a year. For more information visit www.lhsc.on.ca

ABOUT CHILDREN’S HEALTH FOUNDATION

Children’s Health Foundation, founded in 1922, raises funds to ensure that children and their families across Western Ontario receive the best possible care and the most possible hope when faced with a life-threatening or life-limiting diagnosis. By funding equipment, programs and research at Children’s Hospital at London Health Sciences Centre, Thames Valley Children’s Centre and Children’s Health Research Institute, Children’s Health Foundation ensures better childhoods for kids facing serious health issues, and hope, relief and support for those who love them. To learn more, visit childhealth.ca.

Media Contact

Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714