Muscular Dystrophy Canada (MDC) in partnership with the Neuromuscular Disease Network for Canada (NMD4C) and The Foundation for Gene & Cell Therapy (Jesse’s Journey) are pleased to provide the following summary of our recommendations for consideration into the National Strategy for Rare Diseases.
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.
“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.”
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.
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.
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:
February 23, 2021 – Many people living with neuromuscular disorders (NMD) are at greater risk of developing serious symptoms and complications as a result of COVID-19 due to their often pre-existing cardiac and respiratory issues and chronic comorbidities. As the voice of the NMD community in Canada, Muscular Dystrophy Canada (MDC) is calling on governments to prioritize people living with hereditary and acquired neuromuscular disorders in their vaccination roll-out.
Specifically, MDC is asking that the following groups of people with neuromuscular disorders be prioritized: adults requiring multiple caregivers or complex ongoing support in the home, community or institutional setting; the caregivers or home care workers who provide ongoing support to children and adults with neuromuscular disorders; adults with severe or unstable respiratory issues; adults with reliance on home ventilation; adults with clinically relevant impairment of heart function; and, adults receiving immunosuppressants.
SMA & Related Disorders | “Mighty Max” Sych
“Max was diagnosed with SMA Type 2 during the pandemic. We have had to learn to be patient with each other when navigating this new way of life. We have spent hours on Zoom calls with physiotherapists, occupational therapists, and kinesiologists in order to get Max moving. There were many times, we wished we could just be there in person. It has been hard but extremely rewarding when the person on the other side of the screen tells you how well Max is doing!
Throughout the pandemic we have also been advocating for access to life-changing treatment for Max. As a parent you are your child’s number one advocate and although the pandemic made it that much more difficult, it has been so important for us to never give up the fight.”
- Bryarly Parker and Bowden Sych, parents of Max.
Congenital Myopathies | Susan Jahnke
“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. It's inescapable, this reminder of how susceptible I am to complications of COVID-19, and it's felt very scary and isolating to have to be so very careful.
I miss seeing my friends so much, I miss seeing my mum and my brother... but the hardest thing about life during the pandemic is some of the tough choices my family has 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 her work, has meant that she's spending most of her time with her other parent. This has been such a painful and ongoing balancing act.
I also have to choose between getting the medical and health care I need, and risking a 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 GP over the telephone, but I'm missing out on critical care like physiotherapy and 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.”
- Susan Jahnke
Genetic and Immune-Mediated Neuromuscular Junction Disorders | Clinton Peres
“I lost both my parents and my aunt to COVID-19. What’s been even more heartbreaking is the fact that I was not able to see them when they were sick. This was not only because of the restrictions in my province, but because I have a rare condition called Myasthenia Gravis, which puts me at risk for possible severe COVID-19 complications.
The pandemic has made life living with Myasthenia Gravis very challenging. I have always been very close to my family and they have been there for me on my hard days. I still remember when my mom held my hand when I received my diagnosis. It is heartbreaking that I was not there in her final days to support her.
COVID-19 and has taught me the role of family when living with a rare neuromuscular disorder. This pandemic has been hard for all of us – we’ve been forced to stay at home, isolate and wear masks– but keep in mind these precautions are way better than being alone without loved ones in the final moments of your life. Let’s all continue to stay safe not only for ourselves, family members but also for the neuromuscular disease community.”
- Clinton Peres
Metabolic Myopathies | Brad Crittenden
“Living with a neuromuscular disorder, in my case Pompe Disease, in the midst of the COVID-19 pandemic has made healthcare challenging; appointments are postponed, cancelled, changed to virtual or preceded by a virtual call.
Many of us also have lives with limited social connections already so an additional barrier makes life that more challenging. The fear of being affected by COVID-19 when already affected by Pompe Disease, due to risk for respiratory illness, is real.”
- Brad Crittenden
Congenital Myopathies | Alison Engel-Yan and Gavi Engel-Yan
“I have three amazing daughters, 13 year old twins and a 10 year old, Gavi, who has a rare neuromuscular condition called Nemaline Myopathy and is at risk for severe COVID-19 complications due to weak respiratory muscles.
We are worried about risk for our senior parents, but we also worry about Gavi. Vulnerable kids have been entirely forgotten in pandemic responses - not yet eligible for vaccines and reliant on many different caregivers who get no priority for vaccines. We have night nurses and school nurses coming in and out of the house. Gavi also loves and needs to be in school when school is in - schools must be safe for everyone but classes are too big, testing and tracing are inadequate. We know there is risk but she has the same rights to be in school as all kids so we take as many precautions as are within our control. And we worry.”
- Alison Engel-Yan
“COVID-19 affects me more because I have Nemaline Myopathy. Life during the pandemic is boring. I can do less activities than my sisters - like skating and hanging out with my friends outside. When I am outside, it is colder for me because I can’t move around and keep myself warm in my wheelchair.”
- Gavi Engel-Yan
Congenital Myopathies | Sarah Szmidt and Rebekkah Baldwin-Sheldon
“Rebekkah has Distal Arthrogryposis Multiplex Congenita. She has been affected directly by the COVID-19 pandemic by the lack of access and the ability to attend primary and specialist appointments. She was scheduled to have surgery in Spring 2020 and is still waiting. The presence of COVID-19 has shifted our awareness to those with disabilities and health issues but it still hasn’t allowed families the ability to get proper resources to live normal lives.
As a front-line worker, Rebekkah’s access has further declined due to my need to stay working. Taking time off work is doubly difficult: I either take time away from work and face decreased income or go to work and not be able to schedule appointments and care. The result has me being her direct and only caregiver while working full time.
While this young woman regularly experiences pain and is affected with mobility, it doesn’t deter her happy-go-lucky personality that beams with smiles and cheer for everyone she meets. Five years ago, I was told that she would not walk. Five years ago, I was determined to help her be the best version of her that she could. This past year she continues to meet milestones: hopping, jumping, riding a bike, swimming, learning to skate, Taekwon Do, and even participating in a 1 KM walk locally. It hasn’t been easy and there will always be hurdles, but this little girl is my hero, my reason, and my example of true strength and perseverance.”
- Sarah Szmidt
Muscular Dystrophies | Nadia Corapi
“Living in the midst of a pandemic with a physical debilitating disorder like Limb Girdle Muscular Dystrophy definitely presents new challenges. Winters have always been challenging with mobility issues and accessing things safely, but a pandemic definitely it ups the ante.
I have found the inability to access my Pilates class as a huge set back. Pilates has helped keep me strong, more flexible and was an important part of my mental health. Removing this necessary aspect of my life has left me feeling frustrated, limited to physical purposeful movement and a little fearful of what new physical limitations this may cause.
Social interaction is definitely a necessary human need. Missing family, not being able to support one another in difficult times such as grieving has left me feeling removed and disconnected. x`x Although I am blessed to have an amazing husband and great kids - this pandemic has taken its toll on me in many ways: physically, emotionally, and mentally.”
- Nadia Corapi
Congenital Muscular Dystrophies | Johanne Boudreault
“Since May 2019, I have gone from a known degenerative disease diagnosis, Congenital Myopathy, to a rare non-degenerative orphan disease: Bethlem Myopathy. In 2020, three issues turned my life upside down in COVID times. First, I turned 65 which meant I was in the high-risk group for COVID on top of my neuromuscular condition. Then, I fell and broke my arm.Third, my caregivers, not knowing anything about this disease and the effects that it could have on my body, refused to treat me. When I was hospitalized, the COVID-19 pandemic complicated things: I spent 14 days in isolation in the hospital without orthopaedic treatment. I witnessed first-hand the many challenges that healthcare staff had to face and deal with in the pandemic. I felt the strain on orthopedic care, as I had to fight for a few essential treatments so that I could use my arm and start walking again. Denying me these treatments was like nailing me to a wheelchair. Today, I continue to fight for my right to autonomy in the pandemic."
- Johanne Boudreault
Hereditary Peripheral Nerve Disorders | Wes Damon
“Living with Charcot-Marie-Tooth Disease or as some call it, Hereditary Motor Sensory Neuropathy, during the COVID-19 pandemic has been difficult to say the least. I have been shut off from a lot – a lot more than usual life with a rare condition. The simple things like going to a coffee shop or going for a walk through the mall are now gone. For me this was my only way to get out as it was easier on my legs to walk. It has been hard not only on my body but also on my mind – on my emotional and mental health. I always knew living with a rare condition like CMT made me appreciate the little things, but now more than ever I appreciate all the little things in life.”
- Wes Damon
Hereditary Peripheral Nerve Disorders | Traci Williams
“When the pandemic started, it was the middle of winter… as someone with CMT, I tend to “hibernate” in the winters, so I had a well-stocked freezer and much that I needed. I already worked from home and in a way was prepared. In a sense, I felt I was made for this, having had to adapt all my life to various situations. I make sure I am okay on all levels, get the rest I need, connect with people regularly, attend church online, let my doctor know if anything is happening, have what I need delivered, recognize that this is a difficult time, take in the facts, and then strive to find bits of joy (for example, I play music).
I am an introvert, so in some ways, I do not have as much stress… it was always an ordeal to get outside with my disease, so not having to or finding other ways to do what I need to do has taken some pressure off of me.”
- Traci Williams
Autoimmune Mediated Myopathies | Elaine Dicken
“Living with a rare condition, Inclusion Body Myositis, during a pandemic has meant that I could not physically see some of my family and friends for almost a year now. I’m tired of eating my own cooking. I don’t get enough exercise or fresh air because I’m not even grocery shopping as often, particularly in the winter. There are some benefits: telephone doctor appointments to renew prescriptions and learning new technology skills. I was skeptical about virtual physiotherapy appointments, but it has worked quite well. In spite of the challenging 11 months, I’m thankful I have hobbies that keep me connected like volunteering with Myositis Canada and participating in the Muscular Dystrophy Canada virtual network meetings.
- Elaine Dicken
Muscular Dystrophies | Brad Miller
“Living with a rare condition, Becker Muscular Dystrophy, during the COVID-19 pandemic has been tough. I have to take careful precautions when venturing out in the community.
A truly helpful thing I've taken advantage of is the option of scheduling grocery pick-ups, which does help limit my exposure to larger crowds.
Like most, the inability to spend time with friends and family has been the most difficult. I hope one day things will get back to normal.”
- Brad Miller
Muscular Dystrophies | Alfred Breton-Pare and Eloi
“For a family impacted by a neuromuscular disorder, in our case Duchenne Muscular Dystrophy, the pandemic exacerbated the challenges we are already facing. For our son Éloi, it meant delays in medical assessments and for some treatments. With the confinement, we have also witnessed a pause in clinical research activities and restrictions to travel to hospitals located in other provinces. With precious time passing by, it could mean losing eligibility to an investigational treatment (either by aging, loss of physical capabilities or end of recruitment). With the vaccination currently ongoing, let’s hope all activities will return soon to a normal setting for every families within our community.”
- Alfred Breton-Pare
“COVID-19 has certainly limited my recreational and social activities. We could not meet with family and friends like we used too. I also felt isolated from my teachers and classmates during the confinement. It was a great news when schools re-opened. Despite being restricted to only one “bubble”, I realized however that it facilitated creating new friendships.”
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.
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.
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:
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.
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.
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.
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.
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!
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!
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!