Rare Disease Day

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.”

- Eloi

Muscular Dystrophy Canada appoints new CEO

For immediate release, September 11, 2020 The Board of Muscular Dystrophy Canada is pleased to announce the appointment of Stacey Lintern as Chief Executive Officer, effective September 9, 2020.

Stacey has been with Muscular Dystrophy Canada since 2012 and has been acting as the interim-CEO since mid-April, 2020. She has extensive experience in the not-for-profit sector and has worked as a senior manager in large health organizations and in government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. During her time with MDC, Stacey has held a range of senior positions. Before taking on the role of CEO, she was the Chief Operating Officer.

Stacey has built an incredible reputation over the last 20+ years working in this field. She has worked with many non-profit boards, helping to build their capacity to thrive and increase their impact.

Stacey knows our clients, their families and the caregiver community. She has developed successful and enduring relationships with many of our key stakeholders and partners. We believe that Stacey’s leadership, skills, talent, her passion for MDC and for the work we all do will help drive the organization forward as we navigate our way through many of the challenges related to COVID-19 and beyond.

Through her visionary leadership and strong commitment to achieving organizational goals, Stacey maintains a focus on maximizing the potential of MDC’s clients, staff and our diverse group of stakeholders and supporters. In both words and actions, Stacey exhibits a clear dedication to building a culture of empowerment, respect, trust, accountability and innovation.

“I am extremely honoured to serve as MDC’s CEO. I am committed and excited to support the neuromuscular community, face the many challenges, lead and work with our dedicated staff, volunteers, donors, partners and many supporters to deliver our critical mission objectives. I know that people are counting on us to make a difference, and we can”.

Stacey started her career in the Nursing field and made the transition to the disability and health sectors with a focus on independent living, community integration and patients directing their care. Stacey is a graduate of York University Executive Leadership Program and the University of Toronto Post Graduate Executive Advanced Business Management Program. And, she looks forward to continuing her education as she enters into the Canadian Health Executive Program offer through the University of British Columbia.

The Board of MDC is committed to doing everything we can to continue to support our clients and their families through this time, and to advocate on their behalf. We are working closely with and fully support Stacey and the entire MDC team in their efforts to ensure the organization remains strong and viable.

For further information, please contact:

Stacey Lintern
Phone: 647-284-8706 or Email : stacey.lintern@muscle.ca

Thank you,
Donna Nixon,
Chair of the Board of Directors,
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, explore our website or call our toll-free number at 1-800-567-2873.

Celebrate Muscular Dystrophy Month With Us

Eight years ago, I sat in a doctor’s office staring down at a brochure from Muscular Dystrophy Canada mindlessly reading the same line over and over again.

Alfred and his son, Eloi who was diagnosed with Duchenne Muscular Dystrophy need your support. Alfred’s passion for helping others led to him being named an honorary firefighter.

I was in shock. A doctor had just told me my 4-year-old son, Eloi, had Duchenne Muscular Dystrophy. When news like that comes, it’s like the world stops and the sky is falling on you.

All I could think about was that my son was going to stop walking and I would live to bury him and there was little I could do to intervene.

I didn’t know in that moment I would have supporters like you on my side, to help my family through this.

But then we reached out to Muscular Dystrophy Canada (MDC) and learned about the incredible support they are able to provide thanks to donors. In fact, we were so moved that we decided to take action by helping them raise much-needed funds for equipment, research and support for other famliles impacted.

September is Muscular Dystrophy Awareness Month so I hope that you, too, will take action by making a gift today to help support the more than 50,000 Canadians impacted by neuromuscular disorders.

Families like Alfred’s, impacted by muscular dystrophy, need your support.

Because donors like you are having an incredible impact on the lives of individuals and families, like mine, who are living with a muscular dystrophy diagnosis.

For example, thanks to donors, we were able to adapt our home so Eloi can safely and freely get around. He has a scooter. He’s gone to summer camp. And, MDC was even able to visit his elementary school with their Muscle Facts program to help his classmates and teachers better understand his diagnosis and challenges. None of this would have been possible, without your support.

Sadly our story is not unique. Every year, more families have to figure out what a diagnosis of muscular dystrophy means for their son, daughter, brother, mother. You may even be one of those people, and you remember that moment as vividly as I do.

Mostly, I remember feeling helpless. The fear of the unknown can be so overwhelming. But joining the Muscular Dystrophy Canada family has been one of the most transformative experiences of my life. Not only has my family been gifted with new friendships and an invaluable support network – I’ve been able to help other families.

Donors, like you and me, can improve the lives of the thousands of Canadians living with a muscular dystrophy. That’s why I hope you will mark Muscular Dystrophy Awareness Month with a generous gift.

I’ve seen first-hand how gifts from donors play a critical role in supporting individuals. And because of my job, managing clinical trials for a pharmaceutical company, I’ve seen how your gifts are moving promising research forward as well. Research can make the difference between an individual, like my son, walking or spending the rest of their lives in a wheelchair.

Right now, Eloi only needs a wheelchair for long distances. But we know the day may come when he will have to rely on it completely. And, he’ll require other supports to maintain his quality of life. This disorder is progressive. It can be slowed, but not stopped. That’s why ongoing donor support is critical.

By making a gift today, you will be providing hope to all Canadians, whether they have been living with a disorder or they are just getting a diagnosis. Please give generously.

From my family to yours,

Alfred Breton-Pare, Eloi’s Proud Papa

P.S. September is Muscular Dystrophy Awareness Month. Please make a gift to MDC so together we can fund life-changing equipment, and invest in life-saving research.