National
The Leadership in Advocacy Award
Catherine Boivin
The Leadership in Advocacy Award is presented to individuals who make outstanding efforts to advocate for changes in public policy or increase awareness of Muscular Dystrophy Canada and neuromuscular disorders.
Catherine Boivin, the 2022 recipient of the Leadership in Advocacy Award, has been an active volunteer with MDC since 2020, raising close to a million dollars.
Catherine, who is affected by spinal muscular atrophy, has influenced change by participating in Rare Disease Day campaigns, consulting on MDC’s rare disease strategy, joining MDC’s Advocacy Advisory Committee and reviewing MDC’s Self Advocacy Toolkit.
Catherine was impactful in her advocacy efforts by securing meetings with provincial decision-makers to discuss newborn screening for SMA; participating in the drug submission process for Spinraza and Risdiplam; offering her perspective in interviews; and, participating on a roundtable discussing the inequities that exist across Canada when it comes to accessing treatment for SMA.
Catherine shares her story to affect change in the drug regulatory process and is passionate about addressing the challenges associated with having a neuromuscular disorder.
Catherine’s advocacy work has influenced change at both the national and provincial levels and she is a wonderful collaborator who does not hesitate to use her knowledge and skills to support the neuromuscular community.
Outstanding Healthcare Partner Award
Dr. Bernard Brais
The Outstanding Healthcare Partner Award is presented to a physician or clinician for outstanding achievements in improving neuromuscular disease clinical practice and/or who has played a major or lasting role in improving the quality of life of people affected by neuromuscular disorders and their families.
The 2022 recipient of the Outstanding Healthcare Partner Award is Dr. Bernard Brais.
Dr. Bernard Brais is the Director of the Rare Neurological Diseases group of the Montreal Neurological Institute and Hospital. He completed his MDCM, Neurology residency and PhD at McGill studying under Drs. George Karpati, Eric Shoubridge and Guy A. Rouleau. He worked extensively with Drs. Jean Mathieu and Jean-Pierre Bouchard to improve neuromuscular genetic diagnosis and care in Quebec. Dr. Brais has devoted his career to the advancement of knowledge with respect to the genesis and evolution of Québec’s genetic heritage and its influence on health. Dr. Brais provided, and continues to provide, care to thousands of individual affected by neuromuscular disorders and trained NMD expert clinicians and researchers as the co-director of McGill’s Neuromuscular and Neurogenetics Fellowships.
For over 23 years, Dr. Brais has been a longstanding advocate for the neuromuscular community and has held many roles with MDC including Board Member, Medical and Scientific Advisory Committee member, research grant reviewer and spokesperson at fundraising and educational events, conferences and campaigns.
He has served as a Walk4MD Research Champion and speaker at Let’s Talk NMD webinars, helped inform our disorder list, shared information about MDC and continued to refer his patients to us for assistance.
He has also reached out to MDC to partner on initiatives such as the OPMD-specific task force. Dr. Brais has been instrumental with the success of the Neuromuscular Disease Network for Canada, serving as an investigator and supporter of the bio-banking work package. Dr. Brais has also been engaged in promoting newborn screening for SMA, rare disease strategy, real-world evidence generation, and recently moderated a bioethics conference on high-cost drugs for rare diseases. He has served as a mentor to many rising clinicians and researchers. He is a team player and works collaboratively with the clinical and patient community on raising standards for neuromuscular clinical care and research.
Because of the support of partners like Dr. Brais, people with neuromuscular disorders have access to highly trained professionals, new genetic diagnosis, information and programs and services, which positively affect their lives.
Rising Clinician/Researcher Award
Dr. Martine Tetreault
The Rising Clinician/Researcher Award is presented to a neuromuscular researcher or clinician, in the first five years of their career, who has shown significant potential for contribution to neuromuscular research, the advancement of care of people with neuromuscular disorders, or to Muscular Dystrophy Canada in the areas of knowledge translation, education/public awareness, advocacy, service and/or fundraising.
The 2022 recipient of the Rising Clinician/Researcher Award is Dr. Martine Tetreault.
Dr. Tetreault has been an Assistant professor in the department of Neuroscience at Université de Montreal and a researcher at the Centre hospitalier de l’Université de Montréal RESEARCH CENTRE (CRCHUM) since January 2018. She completed her graduate studies in Molecular Biology at Université de Montreal and then pursued her training as a post-doctoral fellow in the Human Genetic program at McGill University. Dr Tetreault’s research specializes in the identification of genetic causes, modulators and studying how these lead to neuromuscular and neurodegenerative diseases. Her research has translational impact as she closely collaborates with neurologists and pathologists in order to use RNA-sequencing to find genetic causes of unresolved myopathy patients.
We are grateful for Dr. Tetreault’s contributions to the Walk4MD Research Champion program, her participation in the Neuromuscular Disease Network for Canada (NMD4C) early-career initiatives and for sharing her expertise at various webinars and educational initiatives. Additionally, she has served on a panel at the Virtual Career Forum and has been working with trainees and students as a mentor through NMD4C.
With her demonstrated leadership and commitment, the next generation of researchers are inspired and primed to support MDC in fulfilling its vision of finding cures for neuromuscular disorders in our lifetime.
Fire Department of the Year Award
Burnaby Fire Department
The Fire Department of the Year Award is presented to a department that has demonstrated overall excellence throughout the past year in the areas of Advocacy, Services, Fund Development and Volunteer Engagement.
The 2022 recipient of the Fire Department of the Year Award is the Burnaby Fire Department.
In 2021, the Burnaby Fire Department and IAFF Local 323 hosted an in-person boot drive, despite the challenges associated with COVID-19 restrictions, forest fires, and flooding. They piloted Tip Tap technology at many of the 40 fill the boot sites, and hosted one of the largest in Canada, which raised $60,477.
Since 1991, their long-standing commitment has helped raise over $1 million in support of our mission and the neuromuscular community. We appreciate the important leadership role that Burnaby Fire Fighters play in British Columbia in recruiting and rallying new departments.
Dr. Katie Manders Courage to Inspire Award
Jessica Janzen Olstad
The Dr. Katie Manders Courage to Inspire Award is presented to individuals, families, groups and/or organizations who/which have gone above and beyond in the areas of Fund Development and Volunteer Engagement.
Jessica Janzen Olstad is the 2022 recipient of the Dr. Katie Manders Courage to Inspire Award.
Since losing her son Lewiston, five years ago to spinal muscular atrophy (SMA) Jessica has worked tirelessly to relieve the financial burden for families of children with SMA while championing a SMA screening program for all newborns in Alberta.
Thanks to Jessica’s connections with policy-makers in Alberta and her willingness to share information and maximize engagement on our evidence-based advocacy initiative, the Minister of Health in Alberta committed to a pilot program and policy directive. Today, babies in Alberta are screened for SMA – in a model that is a first for Canada – whereby a readiness project was supported by a health charity in parallel to government reviews and approvals.
Jessica volunteered her time, her story, her connections, and the funds initially raised by Love for Lewiston to move newborn screening for SMA forward. Jessica’s advocacy, partnership with MDC and genuine approach not only led to a life-changing policy in Alberta – it helped to set precedence for other provinces.
Dr. George Karpati Award for Researcher of the Year
Dr. James Dowling
The Dr. George Karpati Award for Researcher of the Year is presented to an exemplary neuromuscular researcher who has made a significant contribution to neuromuscular research, the advancement of care of people with neuromuscular disorders, or to Muscular Dystrophy Canada in the areas of public awareness, service and/or fundraising.
The 2022 recipient of the Dr. George Karpati Award for Researcher of the Year is Dr. James Dowling.
Dr. James Dowling is a Professor of Pediatrics and Molecular Genetics at the University of Toronto, and a Neurologist and Senior Scientist at the Hospital for Sick Children. Dr. Dowling received his B.Sc. and M.Sc. from Yale University and his MD/PhD from the University of Chicago. Dr. Dowling’s research is focused on gene discovery and therapy development for childhood muscle disorders. His clinical expertise is in childhood neuromuscular disorders and he is considered one of the leading authorities on the diagnosis and management of congenital myopathies. He has authored or co-authored more than 100 peer-reviewed manuscripts, which have been cited over 7,500 times. Dr. Dowling has been a lead investigator for both industry and academic-sponsored clinical trials, and he co-discovered two clinical-stage therapies for congenital myopathies.
Dr. Dowling consistently demonstrates his commitment to the neuromuscular community, MDC’s Research initiatives, Advocacy efforts and Programs and Services. This includes serving as a member of MDC’s Medical and Scientific Advisory Committee for the past four years, and as a peer reviewer of research grants in the last 3 competitions.
Dr. Dowling acts as an “Ask An Expert” for MDC’s research hotline and been involved in the development of educational activities. He continues to refer patients from the clinic at the Hospital for Sick Children and supports the registration process by providing medical review of diagnosis as required.
In addition to his strategic leadership, commitment to high standards of care and bringing together strong teams of allied health professionals, we also appreciate his membership in the Neuromuscular Disease Network for Canada (NMD4C) steering committee and the instrumental role he plays in the work of the Clinical Trial Coordination working group.
Excellence in Service Delivery Award
Holland Bloorview Kids Rehabilitation Hospital
The Excellence in Service Delivery Award is presented to individuals, groups or organizations who partner with Muscular Dystrophy Canada to advance our national mission delivery efforts, and focus on areas where our clients will receive the greatest benefit through the delivery of support, networking or educational activities.
MDC is pleased to announce the Holland Bloorview Kids Rehabilitation Hospital is the 2022 recipient of the Excellence in Service Delivery Award for being an incredible example of how multidisciplinary teams can positively impact families affected by neuromuscular disorders.
The Holland Bloorview team is dedicated to promoting Muscular Dystrophy Canada’s support programs and services, to people newly diagnosed with neuromuscular disorders. They help individuals and families connect with MDC’s equipment program, and provide additional funds to support their patients with the Holland Bloorview Family Fund. They are passionate about the work they do and truly believe in a client-centered approach.
In 2022, the Holland Bloorview team also partnered with MDC on the development of a Sexuality Guide for Neuromuscular Disorders for Canadian Healthcare Practitioners. This guide will facilitate discussions and interventions related to sexual expression and sexual health for teens 14-18 with neuromuscular disorders.
MDC is grateful for our partnership with the Holland Bloorview Rehabilitation Hospital. By working together, we ensure members of our community are connected and are able to live their lives to the fullest.
Distinction in Chapter Leadership Award
Brad Crittenden
The Distinction in Chapter Leadership Award is presented to a Muscular Dystrophy Canada (MDC) Chapter or individual in a Chapter that has demonstrated leadership and innovative work in the areas of Advocacy, Services, Fund Development and Volunteer Engagement.
Brad Crittenden was selected as the 2022 recipient of the Distinction in Chapter Leadership Award.
Brad is a patient advocate and proponent of newborn screening. He is Executive Director of the Canadian Association of Pompe (CAP) and a leader of MDC’s South Okanagan Chapter. Brad has also been a web-designer and dragon boat coach for many years.
Throughout the years, Brad has demonstrated a collaborative leadership style with his tremendous support of advocacy initiatives, fund development and volunteer engagement. He has uniquely struck the right balance of supporting a disorder-specific community while lifting MDC, its mission and activities, by presenting opportunities for joint activities between CAP and MDC. In addition, Brad also plays an important role as a donor, advocate and member of our advisory committees.
Because of the ingenuity and partnership of volunteers like Brad, individuals with neuromuscular disorders have access to a community of belonging and MDC is able to deliver its programs, services, advocacy efforts and fund research, which benefits individuals from a broad spectrum of neuromuscular disorders.
Mary Ann Wickham Award for Volunteer of the Year
Donna Nixon
The Mary Anne Wickham Award for Volunteer of the Year is presented to an exceptional volunteer who has made an outstanding contribution during the past year in the areas of Advocacy, Services, Fund Development and Volunteer Engagement.
Donna Nixon, Past Chair of Muscular Dystrophy Canada’s (MDC) Board of Directors, was selected as the 2022 recipient of the Mary Anne Wickham Award for Volunteer of the Year.
During the COVID-19 pandemic, under her leadership, Donna ensured that MDC was able to meet our research commitments, advocate for access to treatments and offer much needed programs and services.
During Donna’s time as Chair, MDC began its work with Novartis on the newborn screening project and, together, we are changing the landscape for babies diagnosed with SMA. Donna has also been instrumental in changing the organizational culture to one of trust, respect and accountability. Her generosity, time, effort, knowledge and patience have made a significant impact on the leadership team and Board of Directors, for which we are most grateful.
Donna’s supportive, caring, strategic and optimistic approach assisted MDC to cope, recover and now “thrive” through extremely challenging times. Donna inspires others to persevere and deal with challenges and opportunities in a strategic manner, never losing sight of MDC’s mission.
As a volunteer, Donna works tirelessly to lead and is always willing to roll up her sleeves and do the work – even with many competing priorities. Donna’s time and effort is immeasurable.
Because of the perseverance of leadership volunteers like Donna, people with neuromuscular disorders are accessing early diagnosis and have hope for future treatments.
Dr. David Green Impact Award
Novartis Pharmaceuticals
The Dr. David Green Impact Award is presented to individuals, groups and/or organizations who/which have reached a significant milestone with Muscular Dystrophy Canada.
The 2022 recipient of the Dr. David Green Impact Award is Novartis Pharmaceuticals.
In December 2020, Novartis Pharmaceuticals Canada Inc. (Novartis) and Muscular Dystrophy Canada entered a collaborative agreement to work together to add Spinal Muscular Atrophy to newborn screening panels across Canada. Since then, Novartis has become a tremendous partner for MDC and together we are changing the landscape of the neuromuscular community with the national delivery of newborn screening for SMA.
As a result of their financial commitment, communication supports, knowledge sharing and demonstration of trust, MDC has been able to lead discussions with decision-makers, extend our support and offer educational and networking activities. Working with Novartis has demonstrated the benefits of an authentic collaboration!
Novartis supports a key mission of MDC, which is to promote and innovatively advocate in an evidence-based manner for early diagnosis. We know early diagnosis can have meaningful life-changing outcomes for those affected by SMA. We know that because of this partnership, lives are not only being changed, but saved.
Fire Fighter of the Year Award
Mike Rao
The Fire Fighter of the Year Award is presented to a remarkable Fire Fighter who has demonstrated overall excellence throughout the past year in the areas of Advocacy, Services, Fund Development and Volunteer Engagement.
The 2022 recipient of the Fire Fighter of the Year Award is Mike Rao.
Since 2014, Mike has been integral in increasing the Guelph Fire Department’s annual donations to Muscular Dystrophy Canada (MDC) by growing their fill the boot and rooftop campout events.
His efforts have increased his department’s donations from $13,000 to $45,000 annually, bringing their total fundraising efforts to over $400,000.
Mike has played a significant role in recognizing the value of teamwork and engaging many colleagues in fundraising efforts for MDC. Additionally, his commitment to succession planning for Guelph Fire Fighters ensures fundraising for MDC will continue well into the future.
Caring Corporate Partner Award
The Canada Post
Community Foundation
The Caring Corporate Partner Award is presented to a business that has made outstanding financial and/or in-kind donations, including volunteer contribution, to Muscular Dystrophy Canada (MDC).
The 2022 recipient of the Caring Corporate Partner award is The Canada Post Community Foundation.
Through the generous, financial contributions of The Canada Post Community Foundation, MDC has been able to increase awareness, promote inclusion, increase self-esteem, and develop a positive educational environment for students who are affected by neuromuscular disorders.
The Canada Post Community Foundation has given MDC the funding necessary to offer AccessAbility presentations for educators and school-aged children to ensure a more inclusive and supportive educational environment.
Because of The Canada Post Community Foundation, MDC is able to offer integrated and innovative approaches that provide children and youth with neuromuscular disorders with opportunities to learn and play in truly inclusive environments.
Outstanding Philanthropist Award
Lloyd Lawrence
The Outstanding Philanthropist Award is presented to an individual or family whose generosity has enhanced Muscular Dystrophy Canada’s (MDC) mission through significant contribution of their personal financial resources.
Lloyd Lawrence has been selected as the 2022 recipient of the Outstanding Philanthropist Award.
Lloyd has been a long-standing supporter of MDC, serving as a board member and a volunteer for many years. Lloyd is always eager to support MDC in addressing barriers faced by people affected by neuromuscular disorders. He is also committed to investing in research through his generous financial contributions.
Lloyd continues to inspire others to support MDC through his networks, sharing information about our impact and the ongoing needs of the neuromuscular community. His ability to influence has compelled others to support MDC and the neuromuscular community.
Through the generous financial support of donors, like Lloyd, MDC was able to survive and thrive through a pandemic and continue to deliver our mission to enhance the lives of those impacted with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for cures through well-funded research.
Muscular Dystrophy Canada Provincial Champion Award
This award is granted to a stakeholder that has demonstrated outstanding commitment to Muscular Dystrophy Canada (MDC); our mission, vision and values, including but not limited to individuals, families, Fire Fighters, Fire Departments, clinicians, researchers, corporations, donors, volunteers, Chapters, groups and organizations.
Awards are granted based on leadership in the areas of advocating for changes in public policy; increasing awareness of neuromuscular disorders (NMD) and MDC; advancing MDC’s Mission delivery efforts through education, networking, or support activities; improving NMD clinical practice; neuromuscular research; volunteer engagement; enhancing the quality of life of persons affected by NMDs; and raising funds or in-kind support.
Newfoundland and Labrador Provincial Champion Award
Justin Roberts
Muscular Dystrophy Canada is pleased to announce that Justin Roberts is the 2022 recipient of the Newfoundland and Labrador Provincial Champion Award.
Justin, who is affected by Duchenne muscular dystrophy, has been an amazing supporter of the Walk4MD for more than 10 years. In 2021, through various local fundraising initiatives and wonderful family support, he was able to raise $2,541. He promotes his Walk4MD fundraising page through social media, raising both funds and awareness with multiple supporters. Justin also supported the Atlantic Fall Raffle and sold 200 tickets, raising $1,000 in the past year alone.
Because of the passion and determination of individuals like Justin, who know all too well the personal impacts of neuromuscular disorders and how important their engagement is in the work of MDC, others affected by neuromuscular disorders are able to live their best lives.
Prince Edward Island Provincial Champion Award
Noella McDonald
Noella McDonald is the 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for Prince Edward Island.
Noella is affected by spinal muscular atrophy and has been raising funds and awareness for Muscular Dystrophy Canada for close to 30 years. Noella was very involved with the Southeastern New Brunswick (Moncton) Mighty Drivers Chapter until her move back to PEI. In 2021, Noella had her most successful fundraising year making her the top fundraising individual for PEI. She also purchased Fall Raffle tickets, sold Holiday ornaments and personally donated to MDC.
As a result of the commitment of people affected by neuromuscular disorders, like Noella, who understand the value of raising funds for MDC and have a very good understanding of the organization, others who are affected are able to access life enhancing equipment, treatments, therapies and information, and have a community of belonging.
New Brunswick Provincial Champion Award
Shawn Cunningham
The 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for New Brunswick is Shawn Cunningham.
Shawn is a current member of the Musquash Fire Department and has been raising funds for MDC for many years. Most recently, he helped organize the Musquash Fire Department’s annual Fill the Boot event, co-chaired the Royal Fire Fighters Association Truck Pull and assisted with the Grand Manan Lighthouse Campout. In 2021, he joined MDC’s National Fire Fighter Relations Committee. Shawn also takes an active role in recruiting new departments and Fire Fighters to raise funds for Muscular Dystrophy Canada.
Thanks to the long-standing support of Fire Fighters like Shawn, MDC is able to offer a broad range of programs and services, advocate for changes in policy and fund ground-breaking research, to help improve the quality of life of people affected by neuromuscular disorders.
Nova Scotia Provincial Champion Award
Lily MacDonald
Lily MacDonald is the 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for Nova Scotia.
Lily, age 10, has raised over $10,000 by participating in the Walk4MD for the past seven years in memory of her grandfather, Bernie McKeough. This year she raised more than $2500, making it her best year yet. Lily raises funds by posting on social media, organizing bake sales, selling handmade crafts, canvasing family and friends, and workplace fundraisers hosted by supporters. Lily recognizes how important stewarding her supporters is and sends hand written thank you letters and personalized video messages of thanks every year.
Because of Lily’s demonstrated caring, courage, leadership, passion, enthusiasm, teamwork and commitment, others are inspired to raise funds and awareness to improve the quality of life of those affected by neuromuscular disorders.
Quebec Provincial Champion Award
Alfred Breton-Paré
Muscular Dystrophy Canada is pleased to share that Alfred Breton-Paré is the 2022 recipient of our Provincial Champion Award for Quebec.
Alfred, whose son Eloi is affected by Duchenne muscular dystrophy, has provided leadership for the High Rise Challenge for over 10 years. During the past year, Alfred’s team raised over $11,000 for the event. Alfred is proud to share his story to raise awareness of the neuromuscular community. He is also an active member of MDC’s board of directors; bringing the important perspective of families affected to the forefront of our work.
Thanks to the passion and support of volunteers like Alfred, we are able to raise the profile of the neuromuscular community.
Ontario & Nunavut Provincial Champion Award
Guelph Fire Department
The 2022 Ontario and Nunavut Provincial Champion Award recipient is the Guelph Fire Department.
During the pandemic, Guelph Fire Fighters not only held their annual Fill the Boot event, but they added new locations, recruited more Fire Fighters to assist and extended the length of time they raised funds and awareness for MDC. The Guelph Fire Department does an amazing job with succession planning, ensuring the tradition of helping the NMD community carries on. The department also raises significant awareness of our community through social media. Since they began their commitment to MDC in 1971, their Fire Fighters have raised $416,300 in support of MDC’s mission. In 2021, they were Ontario’s top fundraising department!
The commitment and creativity of the Guelph Fire Department allows MDC to continue enhancing the lives of individuals and families affected by neuromuscular disorders and ensures that new generations of Fire Fighters will be there to support our efforts.
Manitoba Provincial Champion Award
Thompson Fire Department
The Thompson Fire Department is the 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for Manitoba.
The Thompson Fire Department has been a committed supporter and partner of the neuromuscular community since 1962, continually raising $5,000 to $10,000 on an annual basis. To date, their department has raised $256,500 in support of MDC’s mission. Through their ongoing participation in Fire Fighter conferences, and their eagerness to learn and share information they have raised awareness of the neuromuscular community. The department’s continued support during the pandemic has helped MDC offer much-needed programs and services to individuals and families affected.
Because of the commitment and teamwork of the members of the Thompson Fire Department, people with neuromuscular disorders have access to medical equipment.
Saskatchewan Provincial Champion Award
Prince Albert Fire Fighters Charitable Fund
Muscular Dystrophy Canada is pleased to share that the recipient of our 2022 Provincial Champion Award for Saskatchewan is the Prince Albert Fire Fighters Charitable Fund.
Prince Alberta Fire Fighters have been supporting MDC since 1971 and, in this time, they have organized Fill the Boot events, rooftop campouts, to raise over $128,000 to date. While they were unable to do their traditional fundraising during the pandemic, the department donated from their charitable reserves, to ensure that MDC was able to continue their work in the neuromuscular community. Additionally, the department took a unique spin on holiday caroling with their “Stop the Caroling Event”, which raised over $1,300 in support of MDC.
Because of the creativity and continued commitment of the Prince Albert Fire Fighters during challenging times, Muscular Dystrophy Canada has been able to reset, rebuild and reignite so we can continue breaking down barriers for the Canadian neuromuscular community and move forward on our path to growth.
Alberta and Northwest Territories Provincial Champion Award
Wesley Bauman
Wesley Bauman is the 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for Alberta and Northwest Territories.
For over five years, Wesley has supported Muscular Dystrophy Canada as part of the Edmonton Fire Fighters, working with his team to raise over $100,000 each year. The addition of an ice bath to their annual Rooftop Campout helped raise funds during a time when donations were declining. Wesley engages with local media, podcasts, and social media personalities to advocate for MDC and the importance of supporting those affected by neuromuscular disorders.
Thanks to the leadership and awareness raised by Wes, people with neuromuscular disorders continue to live life on their terms and MDC is able to advocate for better clinical standards of care, access to treatments and ultimately, cures.
British Columbia and Yukon Provincial Champion Award
Syra Tak
The 2022 recipient of Muscular Dystrophy Canada’s Provincial Champion Award for British Columbia and Yukon is Syra Tak.
For a decade, 20-year-old Syra and her team Devotion 2 Motion have raised funds through the Walk4MD, fostered close relationships with local Fire Departments and created new initiatives that support MDC’s mission, vision and values. Syra is inspired and motivated by Justin and Jayden Johal, who were both diagnosed with Duchenne muscular dystrophy. Syra continues to be active as she and her team walk beside Jayden, and in loving memory of Justin. Devotion 2 Motion raised $10,407 in 2021, and $104,235 in total since 2012.
Because of the outstanding example set by Syra, young Canadians are able to see the impact youth can bring to our community, and support people with neuromuscular disorders to achieve their goals.
Muscular Dystrophy Canada Provincial Change Makers Award
This award is granted to a group that has demonstrated outstanding commitment to Muscular Dystrophy Canada (MDC); our mission, vision and values, including but not limited to families, Fire Departments, corporations, volunteers, Chapters, groups and organizations.
Awards are granted based on leadership in the areas of advocating for changes in public policy; increasing awareness of neuromuscular disorders and MDC; advancing MDC’s mission delivery efforts through education, networking, or support activities; improving NMD clinical practice; neuromuscular research; volunteer engagement; enhancing the quality of life of those with NMDs; and raising funds or in-kind support.
New Brunswick Change Makers Award
Grand Manan Fire Department
Muscular Dystrophy Canada is pleased to share that the Grand Manan Fire Department is the 2022 recipient of our New Brunswick Change Makers Award.
The Grand Manan Fire Department organized its first event in 2020, raising $573. In 2021, the Fire Department got creative and organized a campout on top of the Swallowtail Lighthouse to raise funds for MDC. The 32-hour event raised $2,791 with tremendous support from their community. Not only did the Grand Manan Fire Department raise funds to support our mission, they also brought significant awareness to our cause through social media.
As a result of the teamwork and creativity of the Grand Manan Fire Department, individuals affected by neuromuscular disorders continue to have access to essential equipment, support and information.
Quebec Change Makers Award
Clinique Parents Plus
Clinique Parents Plus is the 2022 recipient of Muscular Dystrophy Canada’s Change Makers Award for Quebec.
Clinique Parent Plus provides free services, advice and equipment to parents affected by a physical disability. Clinique Parents Plus is a great source of information; they understand the particular needs of our persons affected by NMDs; and, they advocate for access to equipment. The Clinique Parents Plus team also supported MDC’s educational efforts by participating in our webinars and networks.
Thanks to the client-centred approach and creativity offered by Clinique Parents Plus, other partner organizations are inspired and people affected by neuromuscular disorders can navigate and access the right resources at the right time.
Manitoba Change Makers Award
Grift Family
The 2022 recipient of Muscular Dystrophy Canada’s Change Makers Award for Manitoba is the Grift family.
The Grift family has supported MDC since 2011. The family raises funds and participates in the Walk4MD every year, and also lead a variety of activities in Holland, Manitoba to raise funds and awareness for the neuromuscular community. The Grift family is also active in Fire Fighter campouts, Fire Fighter fundraising dinners, Chapter events and more. They also play an important role in providing informal support to others with neuromuscular disorders by hosting and participating in social gatherings and connecting through social media.
Because of the consistent engagement and presence of the Grift family, and other Change Makers like them, who help raise funds and awareness of neuromuscular disorders, people with neuromuscular disorders have a community of belonging and are living their best lives.
Saskatchewan Change Makers Award
Team W5
Team W5 is the 2022 recipient of the Saskatchewan Change Makers Award from Muscular Dystrophy Canada.
Team W5 is a long time Walk4MD team. Since 2014, they have raised more than $15,000 annually in their small town of Lankbank, Saskatchewan. Two Team W5 members, Luke and Quinn, are affected by Facioscapulohumeral muscular dystrophy. In 2020 and 2021, Team W5 knew how important it was to continue fundraising even though in-person events were not possible. They created an online auction, solicited prizes from their community, and raised over $18,000. When asked to participate in the virtual 2021 Walk4MD, the family did not hesitate, and they recorded a thank you message for team supporters and the community. The team has also participated in a number of MDC’s educational sessions related to their disorder.
As a result of the commitment of Team W5, and other families like them during difficult times, we were able to improve the quality of life for individuals and families affected by neuromuscular disorders, invest in research initiatives and advocate for meaningful changes to public policies.
Alberta and Northwest Territories Change Makers Award
Calgary Casino Committee
The 2022 Alberta and Northwest Territories Change Makers Award from Muscular Dystrophy Canada is presented to the Calgary Casino Committee.
Every 18 months, the Calgary Chapter Casino Committee works with the Alberta Gaming and Lottery Commission (AGLC) to secure a casino night to raise funds for MDC. The Casino Committee planned an event in February 2022, they coordinated volunteers to fill shifts over a 48-hour period, planned logistics with the casino and ensured all paperwork requirements were met for AGLC purposes. The funds, averaging $50,000 to $75,000 per event, support our essential equipment programs for people with neuromuscular disorders.
As a result of the compassion and determination of the Calgary Chapter Casino Committee, and many other Chapters and families who fundraise on our behalf, people with neuromuscular disorders have access to essential equipment which allows them to live, work and play in ways that are important to them.
British Columbia and Yukon Change Makers Award
Team Ross’s Rollers/Victoria Barbell
Muscular Dystrophy Canada is pleased to announce that Team Ross’s Rollers/Victoria Barbell is the 2022 recipient of our British Columbia and Yukon Change Makers Award.
In 2014, Team Ross’s Rollers was started by the Brust/Wristen family, in support of their youngest son Ross Wristen. Ross, who had Duchenne muscular dystrophy, unfortunately passed away in 2016. Since then, the team has continued their Walk4MD fundraising efforts in Ross’s memory. The team has utilized their creativity to develop a fun and engaging activity, taking turns carrying a 400 lb powerlifting yoke, roughly the weight of Ross’s power chair, on their shoulders. Despite the challenges the pandemic presented, they maintained their support to the neuromuscular community.
Because of the courage and perseverance of Team Ross’s Rollers/Victoria Barbell, along with other families who continue to support the neuromuscular community after the passing of a loved one, others are inspired to continue their commitment to support people with neuromuscular disorders in achieving their goals and living life to the fullest.