What Our Volunteers Have to Say About MDC
To each and every one of our volunteers, thank you from the bottom of our heart for the incredible work you do to support the neuromuscular community — we couldn’t do it without you.
Kelly Hyde
Kelly joined the MDC family more than 16 years ago when her niece was diagnosed with a neuromuscular disorder. Kelly’s leadership, experience, and supremely positive attitude have been instrumental to the Calgary Chapter’s success over the years. Her many contributions include helping lead the Calgary Chapter, planning fundraising events, attending Fire Fighter events as an advocate and leveraging her media knowledge and connections to bring more awareness to the Walk for Muscular Dystrophy in Calgary.
What are hopes for MDC?
“I have so much respect for the people I’ve had the privilege to work with at MDC, both past and current employees, and of course the various volunteers. What I hope the organization will achieve in the near future is to continually find ways to connect with their clients and to provide the platforms/meetings/events that will allow clients to also connect with each other. Human connection is critical even if it’s facilitated through technology. I also see incredible value in MDC’s equipment program and I hope MDC will be able to continue supporting those who need equipment to do the most basic and important day-to-day activities. In the long-term, I hope that MDC will continue their research and work toward finding medications to slow down the progression of neuromuscular disorders and of course eventually find a cure.”
MDC Chapters consist of individuals living with neuromuscular disorders, family members, friends, caregivers, and other community-minded supporters, who raise awareness and funds to support MDC’s mission, provide peer support and opportunities to create life-long friendships with people on similar journeys through socials, events and an extended support system.
Dan Hamel
Dan Hamel is a Fire Fighter from St. Martins, NB and is the Vice Chair of MDC’s National Fire Fighter Relations Committee, a volunteer position. Very early on, Dan recognized the impact the COVID-19 pandemic was having on MDC’s ability to fundraise face-to -face and the effect it was having on the delivery of programs and services. He stepped up by planning his own fundraising events, sharing messages on social media, and encouraging Fire Departments across the country to participate in virtual events and #FillTheBoot.
What motivates you to stay involved?
“I stay involved because of the great relationship with MDC staff and more importantly the clients. We’re making a difference by helping to provide the support people need for everyday living and to participate in activities. I see research making a difference to help find a cure; with so many different types of neuromuscular disorders there is a lot of help still needed. Fire Fighters will be here to help”.
Fire Fighters are MDC’s longest standing supporters and an integral part of the MDC family. We are proud to be their charity of choice and value their partnership, friendship and dedication.
Dr. Robin Parks
“My involvement with MDC started when I was asked by a colleague to participate in the Ottawa Walk for Muscular Dystrophy, well over a decade ago. I met a number of clients and families at that event, and got to know them and their stories. I also learned about the great work that MDC does to provide support services to affected individuals and their families, as well as MDC support for research into neuromuscular disease. Each year, with each Walk, I gained additional appreciation for our neuromuscular community and made many new friends. I was delighted to join the MDC Medical and Scientific Advisory Committee, to help advise and guide MDC in its mission to enhance the lives of those affected with neuromuscular disorders, while seeking cures through supporting research.”
Dr. Robin Parks is a volunteer on the Medical & Scientific Advisory Committee (MSAC). He generously shares his knowledge and support towards improving the lives of Canadians affected by neuromuscular disorders. His contributions to our research strategy, academic mentorship on the Quality of Life and Economic Impact study, scientific peer review in our annual grant competition and expertise in answering our clients critical have been invaluable to MDC.
What motivates you to stay involved?
“At each year’s Walk for Muscular Dystrophy, it is heart-warming to see how close the local neuromuscular community has become, and the dedication the families and volunteers have to raising funds and awareness. I see the same level of dedication at MDC. I am proud to provide my voice and scientific expertise to help those affected by neuromuscular disease. “
The Penner Family
Like many families affected by neuromuscular disorders, the Penner Family (Doug, Cam, Allison & Samantha) from Langley, BC, know from personal experience that fundraising can help directly impact the quality of life for those with neuromuscular disorders. For more than 14 years, they have organized and hosted the Ride for Doug raising thousands of dollars, which MDC has invested in research, as well as programs and support services for Canadians impacted.
Why do you volunteer with MDC?
“Volunteering for MDC allows me to find perspective. It gives me a way to fight back against this relentless disease. Duchenne Muscular Dystrophy can be very overwhelming to the families it impacts. Volunteering as a fundraiser gives my family a tangible way to strike back. We have a goal. A purpose. And when our resolve begins to falter, we have MDC standing with us. Volunteering shows us that we are not alone. We are not the only ones suffering, but more importantly, we are not the only ones fighting back. We’ve seen what the medical research teams can do when the barriers are removed and the resources unleashed. Hopefully our family's volunteer time will help those same advances happen in the quest for a cure for DMD,” said Cam Penner.
Christina Massad
“Living with a neuromuscular disorder means you’ll always be faced with trials and tribulations, both big and small. Sometimes you may feel helpless and vulnerable, while other times you may feel a strong urge to fight back and make the world understand your plight. The weight of Muscular Dystrophy and the challenges it comes with will always be balanced out by the weight of love and support from the staff at Muscular Dystrophy Canada, Canadian Fire Fighters, volunteers, doctors, family, and friends. So, if there’s one thing I’ve learned as someone living with a disability, it’s that life is the greatest act of balance you’ll ever have to learn to perform.”
Christina Massad is the Chairperson of the York Region Walk for Muscular Dystrophy and a public speaker. Christina believes that volunteering is a choice. People will always have the choice to volunteer their time towards a cause they deem important. For her, volunteering is not only a choice, it's a calling. With the strength and lessons she has acquired through her experiences with a neuromuscular disorder, she feels that it’s her duty to help those who aren't able to help themselves and lend a voice to those who have lost theirs. Volunteering is an act of love, and it is her hope that more people will feel compelled to join MDC’s mission.
What is your favourite volunteer experience with MDC?
I'm not sure that I have a favourite volunteer experience because everything I've done and been a part of has been so meaningful and impactful in my life. However, I must say that there is a common thread in all of the experiences that stand out in my mind: the presence and unrelenting support of our Canadian Fire Fighters. Whether I'm visiting a fire department to thank them for their fundraising efforts, or helping out at a boot toll or rooftop campout that they’ve worked hard to organize, some of my greatest memories and experiences as a volunteer include the interactions and friendships I’ve developed with Fire Fighters. They've played a significant role in who I am as a person today and have been a positive influence in my life.
Stephen Rysen
“I don’t do this for myself, I do it for the whole team and others who are living with muscular dystrophy.”
Stephen is a regular attendee at many MDC Fire Fighter events and often speaks to guests at MDC Conferences. He has also presented at many Justice Institute of BC Fire Fighter Recruit classes. He has also helped raise awareness by representing MDC at public fundraising events, and by doing interviews for media articles and videos. Stephen has raised over $50,000 for MDC during his time as a volunteer and has worked closely with Fire Fighter Stephen Sanderson (MDC BC Fire Fighter of the Year). He is a regular at his local Boot Drives and supports the Fire Fighters in their fundraising efforts.
What is your favourite volunteer experience with MDC?
"My favourite memory so far was participating in the puck drop at a Vancouver Canucks game and supporting their fundraiser for Canuck Place and MDC. My biggest highlight was meeting John Ashbridge, Ryan Walter and Ron Duguay. I also enjoyed supporting the Burnaby Boot Drive where I met a Fire Fighter who is now the Mayor in that community. "
Sharon Sparks
Sharon Sparks is a founding member of the Fundy Chapter, a member of the Saint John Walk for Muscular Dystrophy organizing committee and recently retired member of MDC’s Volunteer Engagement Advisory Committee. Sharon is also an active member of Team Sparks in Saint John Walk4MD, where she plans independent fundraising events such as the Lip Sync Battle.
As a parent to someone impacted by a neuromuscular disorder, Sharon is aware of how families are impacted in so many ways by the programs and services offered by MDC. Her family received significant support over the years, including direct financial and emotional support that is not offered by other charities. She volunteers because it is an opportunity to network, have fun, and contribute to the cause for her entire family. From her sons and their families, her siblings, nieces and nephews, extended family and her large network of friends—everyone works together to support MDC’s mission as part of Team Sparks.
What is your favourite volunteer experience with MDC?
My favourite volunteer experience with MDC is having the opportunity to attend several national and regional conferences, as well as retreats and other events, where I am able to share my experiences with other families, healthcare professionals, and other MDC stakeholders. Another big impact on my life was being able to support the mother of an infant with SMA during his short life until his passing. It was very apparent that my moral support gave her strength and hope for the future knowing that my son was in his 30’s and was given the same diagnosis.
William Leslie Truman
"My name is William Leslie Truman.
I volunteer for Muscular Dystrophy Canada on the 2020 Montreal High Rise Challenge organizing committee. I have been participating in the event since 2017.
My younger brother, Jonathan, passed away from Duchenne muscular dystrophy in 2005. He was 27 years old.
I remember the precise moment the neurologist coldly told my mother the diagnosis of my little brother, Joe. He was only 4-years-old at the time. I remember she broke down in tears, realizing that she would say goodbye to her son at the age where adulthood generally begins.
I know very well that this hardship is faced by a number of young moms and dads still today. I understand and share their pain, their immeasurable sadness. By donating my time to Muscular Dystrophy Canada through an event that raises more than $ 300,000 every year for research, critical services and essential equipment needed, I feel like I am participating in the effort to offer these children and their families a life of quality and of dignity.
By serving Muscular Dystrophy Canada as a volunteer, I hope to honour my little brother Joe as well as my little heroes, past and present: Liam, Malek, and all the other children impacted by neuromuscular disorders.”
W.L. Truman
Fire Fighter / First Responder 17-16 SSISA and 40-20 SSISR
