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

Feel Good Friday Client Spotlight: Willms Family

For this week’s #ClientSpotlight, we are excited to feature the Willms family! During COVID-19, parents Josh and Alisha have been keeping busy by creating a more accessible bathroom for their son Emmett to use and grow into. They built a roll-in shower, and an accessible sink to give Emmett more independence and safety in the bathroom.

Their main focus is for Emmett to be independent, and to do the things he wants and needs to do without limitations. MDC was happy to provide them the support they needed to make this all possible.

This time still remains uncertain for many Canadians and families impacted by neuromuscular disorders. If you require support, learn about our programs and services, or contact a Service Specialist in your area. We are happy to provide guidance and support.

The Willms family is also spending lots of time outside to enjoy the spring weather. They have been going on lots of walks together and even planted a garden. On rainy days, Emmett has been using his imagination to turn the dining room table into a pirate ship. He uses his stuffed animals as his pirate crew and the whole family searches the house for treasures together.

Thank you for sharing with us, Willms family! We love hearing your stories about how you are keeping busy and how you are using your imagination to have fun!

Our Systems Navigation program is designed to support clients in all areas of their non-medical needs including: funding equipment to improve daily life, providing emotional and educational support, and ensuring access to vital resources and support systems.

We understand that clients want to live life on their own terms. Our program provides them with the right resources to build confidence, and to fulfill their dreams, while ensuring they have increased independence.

Learn more about our programs and services.

New partnership will provide cough assists for adults in British Columbia

Vancouver, British Columbia – British Columbians living with a neuromuscular disorder will soon be able to breathe easier thanks to a partnership between Muscular Dystrophy Canada (MDC) and Technology for Living (TFL).

The partnership will provide cough assists for adults in BC, who do not have access to this critical piece of respiratory equipment, and to evaluate their health outcomes. Currently, provincial funding for cough assists is only available for children up to the age of 18.

Neuromuscular disorders can contribute to tremendous respiratory challenges; persons impacted are prone to infections and pneumonia. Cough assists can help to prevent these types of complications and improve quality of life. Best practice is that individuals with a neuromuscular disorder that have respiratory involvement start using a cough assist at approximately eight years of age. Unfortunately, once a person reaches adulthood, funding in British Columbia is limited and most people don’t have the financial means to purchase a cough assist themselves.

TFL’s Provincial Respiratory Outreach Program (PROP) provides education, equipment and respiratory assessments for people living with neuromuscular disorders in BC. Under this new partnership, adults who are registered with MDC can apply for a cough assist through PROP.

“It’s thanks to the support of donors, fire fighters, event participants and our family of chapters, that MDC is able to participate in this partnership with PROP to provide cough assists and evaluate the health outcomes of the individuals receiving this vital equipment,” said Stacey Lintern, Interim CEO, Muscular Dystrophy Canada.

“This partnership will help to address the respiratory support needs of the neuromuscular community in British Columbia. However, this funding will only address a small portion of the need,” continues Lintern. “Persons impacted with neuromuscular disorders need access to cough assists; and, we’re committed to working with PROP and the provincial government to provide access regardless of age.”

“As more people with health conditions are living and working at home, it is important that health services meet those needs. In this particular need, it is supporting the basic act of coughing to clear secretions, to keep the lungs healthy,” says Esther Khor, Registered Respiratory Therapist, Manager of PROP. “PROP is excited to collaborate with Muscular Dystrophy Canada, to support the trialing of cough assists in the home. The goal is to learn, identify and support solutions for individuals with neuromuscular conditions. Together with Muscular Dystrophy Canada, we are taking a step together to keep respiratory health a priority.”

 

ABOUT MUSCULAR DYSTROPHY CANADA (MDC)
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. Learn more about MDC online, or call our toll-free number at 1-800-567-2873.

 

ABOUT TECHNOLOGY FOR LIVING
Technology for Living (TFL) works with people who have severe physical disabilities and helps them to live as well, and as independently as possible. Their Provincial Respiratory Outreach Program provides education, equipment and therapy for people living with neuromuscular disorders or chest wall restriction. To learn more about TFL, please visit technologyforliving.org/ or call 1-866-326-1245.

 

MEDIA CONTACT INFORMATION:
Heather Rice
Muscular Dystrophy Canada
Heather.Rice@muscle.ca
902-440-3714

Muscular Dystrophy Canada makes the difficult decision to reduce staff

For Immediate Release – April 8, 2020

Toronto, Ontario – Muscular Dystrophy Canada (MDC) announced that they have temporarily reduced their staff by 17 people in positions across the organization, at all levels.

“We considered all our options before coming to this extremely difficult decision. Of paramount importance was our ability to maintain core services to our clients,” commented Board Chair, Donna Nixon. “MDC’s staff are our most valuable asset in this respect. But the very necessary measures to stem the spread of Covid-19 have resulted in the cancellation of key fundraising events, until further notice. Balancing service to our clients with the financial sustainability of MDC has been uppermost in our minds.”

MDC will continue to deliver critical programs and services, and our Service Specialists remain available to our clients and families.

“We are committed to supporting our clients and families, volunteers, fire fighters, donors and partners. They are the lifeblood of MDC, and they need our support now more than ever. For staff impacted, we will continue their medical and dental benefits, ensure they have access to our Employee Assistance Program, and help them transfer to the appropriate government programs,” said CEO, Barbara Stead-Coyle. “MDC is a family and we must do all we can to work together during this unprecedented time.”

The Board of Directors is working hand-in-hand with MDC’s Executive Leadership to closely manage MDC’s response to the pandemic. MDC has stepped up online communications to our community, including virtual events such as weekly client support sessions. All information will be posted on our website www.muscle.ca, and through our social media channels.

MDC has also signed onto many sector-wide initiatives aimed at advocating for further financial assistance for health charities and Canadian not-for-profits more broadly. Imagine Canada is currently lobbying the federal government for an emergency stabilization fund for the country’s charities that would include cash grants and interest-free loans.

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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.

MEDIA CONTACT

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

COVID – 19: What you should know about this novel coronavirus

Given the recent updates on COVID-19, Muscular Dystrophy Canada has implemented a work from home policy, therefore, effective immediately all MDC offices are closed.

Our staff remain available via email and telephone and will continue to serve our clients, volunteers, donors and other key stakeholders.

During this difficult time, we remind everyone that social distancing is a critical component of reducing the potential harm.

In the coming days, MDC will continue to provide updates as we strive to implement new online platforms and solutions to support our community.

We recommend that everyone continue to be informed by credible sources like the World Health Organization, the Public Health Agency of Canada and provincial health agencies.

Thank you for your continued support and cooperation.

Barbara Stead-Coyle
CEO

COVID-19, is a coronavirus, that is known to cause respiratory infections in individuals who contract the virus. Symptoms include dry cough, fever, tiredness and difficulty breathing, and may take up to 14 days to appear after exposure. Since people with neuromuscular disorders already experience respiratory challenges, it is understandable that you would have concerns and questions about COVID-19.

How to prevent infections

The steps outlined below are good practice, at all times, to inhibit the spread of viruses:
  • Wash your hands thoroughly and regularly with soap and water.
  • Sneeze and cough into your sleeve; when using tissues, immediately put them in the trash and wash your hands.
  • Avoid touching your eyes, nose or mouth.
  • Regularly clean commonly used surfaces and devices you touch.
  • Avoid crowded spaces and close contact with anyone that has a fever or cough.

How you can prepare

You should always have a plan in place should you, or a loved one, become ill. You should have:
  • A list containing the names of your doctors, clinic, pharmacy and insurance company along with contact information.
  • A list of all your medications and the doses.
  • Enough medication for one to two weeks in case you cannot get to the pharmacy to refill your prescriptions.
  • Extra supplies like, hand sanitizers and soap to wash your hands.
For more information please visit the Government of Canada’s website.

How to avoid disruptions to care services for individuals with neuromuscular disorders

  • Screen: Have a sign posted at the entrance of your home for your caregivers and attendants to self-screen and review the precautionary measures they can take while in your home.
  • Greetings: Have your caregivers and attendants say hello without touching (e.g., a wave hello)
  • Wash Hands: Have your caregivers and attendants wash their hands for at least 20 seconds with soap carefully and repeatedly (throughout the day).
  • Sanitize: Have your caregivers and attendants use hand sanitizer (at least 60% alcohol-based) when they arrive at your home and each time prior to touching or feeding you.
  • Disinfect: Have your caregivers and attendants clean, sanitize and disinfect the surfaces that are touched in your and use disinfecting wipes on items that are frequently touched (e.g., cell phones, doorknobs, your wheelchair controls, lifting device controls, and remote controls). Make this convenient by having wipes near the items that should be regularly cleaned.
  • Back Up: If your attendant becomes sick, ask them to seek medical care. Ensure you have sufficient back up attendants in case your caregivers and regular attendants cannot work; your attendants may not be able to work because either they get sick or they need to take care of a family member who is. You will still need assistance, so make sure you have someone who can provide it.

What to do if you think you might have the infection