Fundraising – Page 3 – Muscular Dystrophy Canada

Change someone’s tomorrow – today!

I had a fifty-fifty chance of inheriting the gene from my mother. I didn’t. But my little brother did. I feel a lot of guilt but all I can do is give my time, money or muscles – sometimes all three – to make a difference for others who are affected by neuromuscular disorders

William Truman

William Truman is a Fire Fighter from Quebec. He’s also a father, friend, son, brother and generous supporter of Muscular Dystrophy Canada (MDC).

Will and his brother Joe, separated by just a year and a half, grew up extremely close. Despite being diagnosed with Duchenne muscular dystrophy (DMD), Joe was always laughing and was such a happy little boy. As a protective older brother, watching Joe grow up with so many challenges was very difficult for Will and brought up a lot of feelings of guilt.

It’s hard not to get emotional when I hear stories like this from families affected by neuromuscular disorders. When Will and I spoke about why he supports MDC, I knew I had to share it with you.

But before I go any further, let me say thank you. It is because of the continued support of donors like you that we are seeing great change and momentum in neuromuscular research.

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Will longed to see research advances in Joe’s lifetime.

We are making progress, but there is still a long way to go before we find cures. I’m asking you to help us continue this momentum by making a donation today.

When Will was a kid, MDC helped his family purchase equipment and provided them with supportive services. Having MDC as a partner in Joe’s journey, their journey as a family, was so impactful.

That’s why Will feels that it’s so important to support MDC. He knows exactly how much you are helping families. Right now, and in the future. In his words:

It’s impossible to not find reward in supporting MDC. My favourite part is meeting the children who participate in events like the High Rise Challenge. Seeing their shy smiles, seeing it change to not so shy when they get to sit in the fire truck. That’s why I raise funds – to help moms and dads who are going through what my parents experienced so that their stories have a different ending.

The future is promising. In 2021, the first-ever gene therapy clinical trial for DMD is taking place in Canada and new therapies are in development. We know the breakthroughs we make in research are not isolated to one neuromuscular disorder and will lead to even more new trials and treatments.

Your unwavering support is critical as we work with research, clinical and academic communities to relentlessly search for treatments and cures.

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Your support will make the world a little brighter for families on this journey.

I am so grateful when supporters like Will share their story with the hopes of motivating others to give back as well. At MDC we are a powerful community and the impact we make is because of you.

I am so proud of how far we’ve come and where we’re going. Thank you for changing someone’s tomorrow – today!

Stacey Lintern
Chief Executive Officer

PS. Your gift today will help ensure families in the future will benefit from the emerging research as we get closer to cures.

PPS. Making your donation is easy. Simply click here or you can also call 1-800-567-2873 toll-free to make a gift by phone.

Researchers from across Canada join The Tenaquip Foundation’s Walk4MD to raise awareness and funding for neuromuscular disorder community

FOR IMMEDIATE RELEASE April 15, 2021

Toronto, Ontario – For the second year in a row, Muscular Dystrophy Canada (MDC) is bringing the neuromuscular disorder (NMD) community together virtually for its annual Walk4MD, which raises much needed funds to support Canadians affected – and this year researchers are joining the Walk4MD family.

On June 19 at 3 p.m. EST, thousands of Canadians including six prominent NMD researchers across the country will come together, virtually, to participate in The Tenaquip Foundation’s Walk for Muscular Dystrophy (Walk4MD).

Dr. Reshma Amin from the Hospital for Sick Children in Toronto is excited to be one of the Walk4MD Research Champions. “I look after so many amazing children with neuromuscular disease and their families. They deserve to be celebrated and what better way to do so than in partnership with MDC through the Walk4MD.”

“Important advancements are taking place in research right now, and we want to ensure that these advancements continue, and result in better treatments and ultimately a cure for neuromuscular disorders. We feel very fortunate to have the support of Dr. Reshma Amin, MD; Dr. Bernard Brais, MD, PhD; Dr. Nicolas Chrestian, MD; Dr. Robin Parks PhD; Dr. Gerald Pfeffer, MD, PhD; and Dr. Martine Tetreault, PhD and look forward to our NMD community getting to know these incredible individuals better,” said Stacey Lintern, CEO, Muscular Dystrophy Canada.

She added, “I’m also pleased to share that The Tenaquip Foundation is joining us again as title sponsor, and Global has returned as media sponsor for the second year in a row. Like us, they are committed to raising awareness and funds for the Canadian NMD community.”

The Tenaquip Foundation’s Walk4MD is a signature fundraising event for MDC that raises critical funds to support Canadians impacted by neuromuscular disorders. This year, due to the ongoing COVID-19 pandemic, the funds raised are more important than ever.

“There is still urgency to raise funds to meet the increased needs of our clients during this time,” says Lintern. “Like last year, we’ve had to cancel the majority of our fundraising events for the safety and well-being of our team and the NMD community. That unfortunately, has resulted in a 60 per cent decrease in revenue in our first quarter last year.”

The goal of The Tenaquip Foundation’s Walk4MD this year is to raise $870,000. These funds will be invested in services and programs, like equipment, and ensure MDC can meet the unique needs of the neuromuscular community while continuing to invest in research for better health outcomes for individuals impacted by neuromuscular disorders.

To learn more about The Tenaquip Foundation’s Walk4MD or to register for this exciting event, please visit walk4MD.ca

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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 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

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.

Muscular Dystrophy Canada Receives National Accreditation

March 3, 2021 – Muscular Dystrophy Canada (MDC) has been awarded accreditation in Imagine Canada’s Standards Program for excellence in non-profit accountability, transparency, governance and fundraising. Created “by the sector for the sector”, the Imagine Canada Standards Program is the only national accreditation program that is designed for all Canadian charities and non-profits.

To earn the accreditation, organizations must demonstrate excellence in five fundamental areas: board governance; financial accountability and transparency; fundraising; staff management; and volunteer involvement. Accreditation is a sought-after hallmark of excellence within the sector for funders, donors, sponsors and supporters alike.

Organizations receiving the accreditation are awarded a Trustmark to signal credibility and build confidence with donors.

“The Imagine Canada Standards Program accreditation demonstrates MDC’s commitment to our donors, supporters, all Canadians who are impacted by neuromuscular disorders, and to the work that we do,” said Donna Nixon, Chair, Board of Directors, Muscular Dystrophy Canada.

Nixon added, “We’ve always held to these standards, but by completing this comprehensive application and peer-review process we’ve been able to refine and evolve some of our practices to further strengthen the organization. My fellow directors, the leadership team and staff at MDC were all instrumental in making this accreditation possible. I thank them for their hard work and commitment through the application process, and for ensuring that MDC is upholding Imagine Canada’s standards for excellence and leadership in the non-profit sector each and every day.”

“Earning the accreditation, especially in these changing times, shows remarkable resilience, and a strong commitment to innovation and excellence. We commend the latest well-deserving recipients of the Trustmark for achieving Imagine Canada’s Standards accreditation, and demonstrating outstanding adherence to sound governance,” said Bruce MacDonald, President and CEO of Imagine Canada.

To learn more, visit imaginecanada.ca.

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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 THE IMAGINE CANDA STANDARDS PROGRAM

The goals of Imagine Canada’s Standards Program are to increase organizational excellence and transparency of charities and nonprofits, to build resilience and to strengthen public confidence in individual organizations and the sector as a whole. To earn the accreditation, organizations must meet 73 standards in financial management and accountability, fundraising practise, board governance, staff management, and volunteer management.

MEDIA CONTACT INFORMATION:

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

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.

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!

Important Update on Phone Solicitations

Muscular Dystrophy Canada does not use telemarketing services. You can support Fire Fighters and help them Fill the Boot for Muscular Dystrophy Canada and the individuals and families impacted by neuromuscular disorders by going to filltheboot.ca. For Donations $20 or more you will be emailed a tax receipt.

STATEMENT REGARDING PHONE SOLICITATIONS

Several years ago, the Canadian Fire Fighter Curling Association (CFFCA) retained a telemarketing company to assist in fundraising for their annual curling event. A portion of the funds raised in past years were donated to MDC.
Muscular Dystrophy Canada can confirm a campaign soliciting donations for the Canadian Fire Fighter Curling Association has begun, seeking donations that support the Canadian Fire Fighter Curling Association.

We have received complaints regarding the tone and approach of solicitation calls. We have brought these to the attention of the President of CFFCA.
Should you have any concerns or questions please contact the Canadian Fire Fighter Curling Association directly at cffca.ca.

We sincerely thank all of our generous supporters for making our work possible. Again, to help Fire Fighters #filltheboot go to filltheboot.ca.