Advocacy – Page 8 – Muscular Dystrophy Canada

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.

MDC Statement

December 4, 2020

Statement from Stacey Lintern, Chief Executive Officer, Muscular Dystrophy Canada on a Collaboration with Novartis for National Newborn Screening in Spinal Muscular Atrophy (SMA)

“The remarkable story of Aiden Deschamps shared this week by Newborn Screening Ontario and the Children’s Hospital of Eastern Ontario demonstrates the profound impact newborn screening has on the quality of lives of children born with spinal muscular atrophy (SMA). We know that for these children, promising outcomes are possible with a timely diagnosis and early access to care and treatment. We applaud Ontario for recognizing this and being the first province to add SMA to their screening panel.”

“As an umbrella national organization that represents individuals impacted by neuromuscular disorders including SMA, we believe all Canadian babies should have an opportunity to realise their developmental potential. Building upon Ontario’s leadership, we are excited to embark on a collaboration for nation-wide newborn screening collaboration with Novartis Pharmaceuticals Canada Inc., who have committed up to $2 million. This investment coupled with our combined expertise will fuel the goal of making newborn screening for SMA a reality from coast-to-coast.”

“This landmark effort will bring together those with lived experience, medical experts, patient advocacy organizations, governments and other key stakeholders. We are incredibly proud of this important initiative and look forward to working with the SMA community across the country.”

For more information, contact:

Stacey Lintern
CEO, Muscular Dystrophy Canada
Phone: 647-284-8706
Email: Stacey.Lintern@muscle.ca

Don’t Forget Me This Holiday Season

The world is a scary and lonely place right now. Due to the global pandemic, we are isolated from our friends and family. Our routines have completely changed. We aren’t able to do the things we love and visit our favourite places. This is what life is like, every day, for many individuals affected by neuromuscular disorders.

My name is Warren. I’m a husband, a father, an advocate and so much more. I also have Becker’s Muscular Dystrophy. I wanted to share my story with dedicated donors, like you, because you’re having a profound impact on the lives of so many people affected by neuromuscular disorders – in ways that you may not even realise. And for that you deserve much gratitude and thanks.

I was eighteen years old before I was diagnosed. As frustrating, demoralizing and scary as it was to grow up unable to do things and not know why, it made me incredibly thankful when I finally did receive a diagnosis.

I remember being compared to my younger siblings. I was often called lazy. My experience of being treated less than fairly made me the advocate I am today. I’m also dedicated to raising funds for Muscular Dystrophy Canada (MDC), because I know from personal experience that the resources, connections and programs they offer are life-changing. I know these services are only possible, because of gifts from special donors like you.

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MDC is at great risk of not being able to continue offering these incredible services. Their revenue has drastically decreased during the pandemic, and demand for programs and support services has risen. You have been instrumental in providing these services in the past. Will you consider donating today to ensure individuals, like me, can continue to access the support we need during these challenging times?

The holidays are almost here and people are getting excited and finding new ways to celebrate with their loved ones. For me, the holiday season means snow, increased expenses and further isolation and loneliness.

I hope this holiday season you will remember the challenges many of us are facing.
Because you have the power to give the gift of hope and connection by supporting MDC.

Sometimes I get very angry. I’m angry that my loving wife and wonderful children have
to watch their dad struggle. I’m angry that I can’t be there for them in the ways I want to be. I’m angry that we, the disabled community, so often seem to be forgotten. I can’t deal with the anger and isolation alone. Thankfully I have a friend like you in my corner.

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Because of you, I am able to participate in MDC’s virtual network meetings. These meetings give me a chance to connect with others who understand my situation and frustrations. It also gives me the chance to help others and be a support system for new friends across the country.

Did you know you were providing a safe, accessible way for individuals affected by neuromuscular disorders across the country to connect with each other, form friendships and reduce isolation? This type of gift is invaluable. But without your continued generous support, these opportunities for connection are at risk.

You have the power to bring people together, to reduce isolation and loneliness and to brighten someone’s day in a meaningful way. Will you make a donation today to spread a little holiday joy?

The financial support, equipment and emotional connections you provide are important every day, but even more so during the holidays. I hope you will make a donation today to make sure no one feels forgotten this holiday season.

Warm regards,
Warren Jones

P.S. Give the gift of joy and connection today. Then if you know someone impacted by a neuromuscular disorder, tell them how you are supporting MDC and encourage them to attend a virtual network meeting. I’d love to make a new friend.

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WMS Challenge

Many neuromuscular specialists and members of multidisciplinary neuromuscular teams in Canada are part of the World Muscle Society (WMS). WMS provides a multidisciplinary scientific forum to advance and disseminate knowledge in the neuromuscular field for the benefit of patients; stimulates, encourages and helps to develop programs for professionals working in the neuromuscular field; and promotes the achievement of standards in clinical practice.

This year the WMS2020 meeting was scheduled to take place in beautiful Nova Scotia, Canada and was meant to mark WMS’ 25th anniversary year. But unfortunately due to COVID-19, the meeting was re-envisioned as a first ever virtual congress.

Because people living with neuromuscular conditions have been hit particularly hard by the COVID-19 pandemic, WMS has asked all WMS2020 Congress attendees to get involved by taking on their very own #WMS25CHALLENGE to raise money and awareness for relevant charities across the world.

Muscular Dystrophy Canada has been selected as the neuromuscular organization of choice for Canada. This call for support is timely: Due to the COVID-19 pandemic, MDC has seen an increased demand for mental and emotional well-being supports, evidence-based information, essential equipment and advocacy for equity-focused policies. But while there has been an increased demand for our programs and services, the pandemic has significantly affected our available funding. Since the pandemic, MDC has experienced a 60% decrease in revenue. All of our in-person fundraising events have been cancelled and this has been challenging as our organization relies on our supporters and donors to fuel our mission. There has been a 40% cut to funding for the equipment program and a 75% cut to the budget for the Annual Research Grant Competition. In the past year we funded over $1.6 million dollars of research grants and leveraged additional funding for a total of approximately $3.5 million towards team grants and supporting infrastructure. We funded over 1 million dollars in funding essential equipment and technology supports for people living with neuromuscular disorders, but today we have over 100 individuals on the wait list to receive such life-changing equipment. Let’s not slow down the incredible progress that has been made.

Let’s keep the momentum going – if you are attending #WMS2020 meeting, participate in the #WMS25CHALLENGE and help raise money for MDC. [https://muscle.akaraisin.com/ui/directgiving/donations/start (Enter Code: WMS25)] Share your post using the hashtags #WMS25CHALLENGE and #WMS2020 to make sure it features on MDC and the Congress Twitter walls.

In advance, thank you for your support and for positively impacting the lives of Canadians affected by neuromuscular disorders!

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!

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.

Feel Good Friday Client Spotlight: Ken M. Kramer

For this week’s #ClientSpotlight, we are proud to feature Ken M. Kramer, QC. Ken is the Principal & Senior Associate Counsel for KMK Law, and was also the first person with a neuromuscular disorder to lead Muscular Dystrophy Canada as Chair of the Board of Directors.

Ken is an advocate for accessibility and inclusion both in the province of British Columbia and nationwide through various initiatives.

Ken has, and continues to work closely with the media, lawyers across the country, disability groups in British Columbia, senior members with the Ministry of Health, and with the government. A big part of his work is focused on advocacy and helping to develop important policies associated with healthcare and individuals living with disabilities.

“Advocating for people with disabilities is not just something I do as a part of my career—but because I believe in advocacy and promoting inclusion,” says Ken. “I am a strong advocate for myself, and there are others like me. But some don’t have the ability to speak up, so a lot of the things I do are for them.”

Are you interested in advocating in your own community but you’re not sure where to start? Ken shares some advice on how to get started:

“It has to be something that you genuinely believe in,” says Ken “Something you can articulate your thoughts around. It doesn’t need to be sitting with ministers or premiers, but it can result in other methods, like getting associated with an organization that shares your vision or meeting with your MLA—or even writing an opinion piece for your local paper. Everything has an impact.”

Another piece of advice that Ken suggests is to think strategically. “Try not to complain when you provide an issue,” says Ken. “But also come up with a solution. Come up with different options. Find a solution that also has an economic advantage.”

Thank you, Ken, for continuing to use your voice to promote accessibility and inclusion. We can’t wait to see what you will do next to help support individuals living with disabilities.

At MDC, advocacy plays an incredibly important role in delivering our mission. Learn more about the advocacy work that MDC currently supports, and how you can get involved.

National Volunteer Week 2020

Muscular Dystrophy Canada is a volunteer-driven organization. We rely on dedicated, enthusiastic, diverse and dynamic people to help us meet our mission – from clients to family members, community supporters to like-minded organizations, and healthcare professionals to Fire Fighters and beyond.

All of our volunteers are key partners in the delivery of MDC’s support programs, services, fundraising efforts, and governance. We want to thank ALL of our wonderful volunteers for everything they do, and for believing in our mission.

For National Volunteer Week (April 19–25), we highlighted a few of our extraordinary volunteers. Read their profiles below:

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

Public Health Agency of Canada
Government of Canada novel coronavirus toll-free info line: 1-833-784-4397
Government of Canada Travel Advisories
World Health Organization