The 25th High Rise Challenge takes place Saturday, October 8, 2022. Join us, and hundreds of Fire Fighters, paramedics, police officers and members of the community, as they climb the 36 floors of La Cité de l’énergie in Shawinigan, Quebec – twice – for a total of 1,190 steps.
THE BOOTS ARE BACK AND WE NEED YOUR HELP!
No one has missed seeing Fire Fighters out in the community supporting individuals affected by neuromuscular disorders more than Fire Fighters themselves.
“We are so happy to be in a position where we can bring the boots back out into the community to raise funds and awareness.”
Dan Hamel, Chair of the National Fire Fighter Relations Committee
Shad’s R&R annual golf tournament
In 1973, the late Fred Shaddick and several of his associates, mostly from the automotive aftermarket sector, decided to get together for a fun day where competitors put business aside to focus on the larger cause of raising funds and awareness for Muscular Dystrophy Canada.
Since the first tee off 47 years ago, the Shad’s R&R annual golf tournament has raised over $5.2 million for life-changing neuromuscular research.
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 affected by neuromuscular disorders by going to filltheboot.ca.
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.
In the past, we received complaints regarding the tone and approach of these solicitation calls and brought this to the attention of the CFFCA President.
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.
Give the gift of a new beginning
We didn’t know that with treatment her story could be different.
Lucy should have received treatment before symptoms appeared and thanks to the advocacy of MDC, other babies won’t have to wait.Laura Van Doormaal
Imagine seeing your newborn’s health rapidly decline at three weeks of age. You had been watching them kick, cry, suck their thumb and feed wonderfully, but now you start to notice weakness in their arms and legs. Then, two weeks later, your perfectly healthy, full-term baby is struggling to feed and breathe, and you are receiving a diagnosis that includes the heart crushing words “rarely survive past two years”.
Laura and Scott Van Doormaal do not have to imagine this scenario. This is exactly what they went through when, at five weeks old, their daughter Lucy was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
Lucy began a treatment for SMA immediately and then at five months old, on September 9, 2020, she was selected to receive a new gene therapy. For the Van Doormaal family, this was a new start.
All of us at Muscular Dystrophy Canada (MDC) are grateful that Lucy had the opportunity for a new beginning, and for her medical team that made it possible. But we know not everyone has this experience.
It is because of generous donors like you that we’re able to advocate for earlier diagnoses of neuromuscular disorders across Canada, fund more research to improve treatment options and search for cures. We’re making progress, but there is so much more to do.
In a neuromuscular disorder like SMA, where time is of the essence, early diagnosis and prompt access to treatments are critical to achieving the best possible outcomes. Unfortunately, this is not the reality for most Canadians….yet.
Please consider making a gift today. Your donation will ensure that people like Lucy receive earlier diagnoses, and have access to important programs and services that can support their emotional, mental and physical health.
Today, although there is still a long road ahead, Lucy is thriving. At almost two years old, Lucy has started standing with support, communicating more and showing off her love of dancing. She has regained her ability to eat, and truly loves mealtime. Laura told us that:
“Early diagnosis and access to treatment has the biggest impact on the future for families who experience neuromuscular disorders like SMA. I know this is something MDC is passionate about.”
We know that access to treatment before symptoms appear can change a life. Together, we can ensure that screening and diagnoses are available as early as possible, even before 5 weeks of age. That’s why I’m asking you to make a donation today. Your support will mean a new beginning for people across the country.
You can help save lives.
I am grateful to each donor who has invested in our shared goals. You have already made a difference to our community. Thank you for supporting our important work and for your continued partnership.
Sincerely,
Stacey Lintern
Chief Executive Officer
PS. Your gift today will help ensure people diagnosed with neuromuscular disorders receive the treatment they need as soon as possible, before it’s too late.
PPS. Making your donation is easy. Simply fill out the enclosed reply form and return it in the reply envelope, or make your gift online at muscle.ca/give. You can also call 1-800-567-2873 to make a gift by phone.
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.
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.
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
-30-
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 RiceMuscular 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.“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.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.
- 30 -
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.
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.