I am involved with Muscular Dystrophy Canada because: “I have seen first-hand the help and hope it brings to families through peer support, funding for equipment, and research. I have had a life-long connection with the organization, in my youth through my father’s involvement as a firefighter and more recently since my son Alex was diagnosed with Duchenne Muscular Dystrophy in 2003.”

I am involved with Muscular Dystrophy Canada because: “MDC is a national team of diverse people with different backgrounds and experiences. Some members of this team are those affected by MDC?s mission to enhance the lives of those affected by neuromuscular disorders. This includes people with muscular dystrophy, their families and friends, caregivers, educators, and employers. Other members of this team include people who share MDC?s values of determination, courage, passion and caring. Across Canada this includes thousands of Fire Fighters, donors, medical professionals, MDC Staff, researchers, volunteers, and many others. Most importantly this team of resolute and brave people share a common vision: To find a cure for neuromuscular disorders in our lifetime. I am proud to be but one person on this enthusiastic and caring team.”

I am involved with Muscular Dystrophy Canada because: “I have seen the difference Muscular Dystrophy Canada can make in the lives of the people it serves, in particular with one of my close friends and colleagues.”

I am involved with Muscular Dystrophy Canada because: “I became involved with Muscular Dystrophy Canada in 1989 as a volunteer firefighter and have served as Chair of our department since 1991. I remain involved because I believe as a group, we can make a difference.”

I am involved with Muscular Dystrophy Canada because: “It is the organization supporting families like mine, present since the DMD diagnosis of our son Eloi. Through the High-Rise Challenge, I want to actively support him. Being sponsored by firefighters, we are combining our efforts to raise awareness to our cause; and fundraising in order to finance research for a cure & services to Canadians living with a neuromuscular disorder. Being a member of the Board of Directors, I want to use my experience and knowledge of the pharmaceutical industry to the benefit of Muscular Dystrophy Canada. I hope to contribute in facilitating the awareness amongst clients of clinical studies being conducted in our country. By having full knowledge of potential new treatment options, MDC clients will be better equipped to take an informed decision regarding their desire to participate or not. Finally, I also want to play a role with MDC being a leader in advocating for an easy and universal access to potent and new treatments for neuromuscular disorders.”

I am involved with Muscular Dystrophy Canada because: “I am a patient with a neuromuscular disease so I benefit directly from the services of MDC. Also, I have been a volunteer since 2011 so I understand all the aspects of the important work that is done by MDC. Being a patient and also a former scientist, I can bring to the board the importance of patient input.”

I am involved with Muscular Dystrophy Canada because: “both my family and I have experienced first-hand the importance of supporting families and individuals with neuromuscular disorders – from equipment, important research updates, peer support and simply belonging to a broader community. Now in my adult life I want to help chart a future where the organization can continue this wonderful legacy and grow the support needed to help more families, researchers, clients and allies.”

I am involved with Muscular Dystrophy Canada because: “I want to do everything in my power to help provide support and opportunities for individuals and families impacted by neuromuscular disorders.”

I am involved with Muscular Dystrophy Canada because: “I was born with Spinal Muscular Atrophy and I want to utilize my life experiences in government, education, banking and the legal system to advance the Mission and Vision of Muscular Dystrophy Canada.”

I am involved with Muscular Dystrophy Canada because:“…as a retired Fire Fighter I am aware of the synergy that has existed between Fire Fighters and MD in both the US and Canada. I would like to work to foster that relationship so that Fire Fighters can contribute more to assist the important work Muscular Dystrophy Canada does on behalf of its clients.”

I am involved with Muscular Dystrophy Canada because: “I strongly believe in giving back to our society and ensuring that everyone has a chance to participate, be as productive as possible and enjoy life to the fullest. People with neuromuscular disorders face significant challenges every day. It’s important that we do all we can to support them. Together, we can do great things!”

Je suis impliquée avec Dystrophie musculaire Canada parce que : « Muscular Dystrophy Canada is part of my DNA. I was introduced to this big family as a child. Having spinal muscular atrophy, I served as a Canadian spokesperson. Later on, I had the opportunity to benefit from the organization’s services. Over the years, I’ve always been close to Muscular Dystrophy Canada, hosting fundraising events with friends and family, and even helping to organize the Montreal Walk and Roll. More recently, I’ve benefited from research efforts thanks to a new treatment for spinal muscular atrophy. I live and breathe the mission on a daily basis… Now it’s time for me to put my experience and knowledge to work for this exceptional organization. As they used to say when I started out, if we give generously, we will prevail! I still believe in that… »

I am involved with Muscular Dystrophy Canada because: “children with neuromuscular disorders have always held a special place in my heart – first when I was a camp counselor at an Easter Seals camp in New Brunswick, and now through my position as an Occupational Therapist at the Stan Cassidy Centre for Rehabilitation. The positive impact of Muscular Dystrophy Canada is one which can be clearly seen through the support, education, research and funding provided to children, their families and teams of health care professionals. The feedback shared by families who have been involved with Muscular Dystrophy Canada has motivated me to become a more active member of this organization, so that I too can work to better the quality of life for individuals with Neuromuscular Disorders across our country.”

I am involved with Muscular Dystrophy Canada because: “of the organization’s deep commitment to both research and program delivery. The mandate is important to the lives of many Canadians and I am pleased to be involved in the ongoing development of priorities and programs across the country.”

Stacey joined Muscular Dystrophy Canada in 2012, and has worked in the not-for-profit sector for over 20 years. She has worked as a senior manager in large health organizations and the government, where she managed organizational development, strategic planning, stakeholder relations, partnerships, and mission delivery. Stacey started her career with the RN program at Seneca and was later a graduate of York University and the University of Toronto, specializing in non-profit business management in the executive business programs.

Wise words from Stacey

“Our community has taught me to persevere, be bold, adapt, to not give up—and to stay forever hopeful. It has allowed me to be committed to visionary leadership and achieving organizational goals to maximize the full potential of clients, staff, volunteers, and other stakeholders. I am so fortunate to work in an organization that is passionate and committed to making a difference.”

Kendra has spent her entire career working in the not-for-profit sector. She has more than 25 years of experience in all areas human resources and volunteer engagement including: talent engagement, recognition, performance management, compensation, training, wellness, and safety. Kendra believes that the human resources and volunteer engagement portfolios play a strategic role in helping Muscular Dystrophy Canada achieve its overall direction, goals and objectives.

What is your favourite quote?

My favourite quote is from Steve Jobs: “If you are working on something you really care about, you don’t have to be pushed. The vision pulls you.” This quote speaks to the passion our staff and volunteers have for mission and vision of the organization. We Work as One to do more, give more and ultimately, ensure that people living with neuromuscular disease live their best lives.

Marie-Helene Bolduc joined Muscular Dystrophy Canada in 2005. Marie-Helene has over 25 years of progressive not-for-profit experience and a MBA from Université du Québec à Montréal (UQAM). During her time with MDC, Marie-Helene has been responsible for provincial advocacy, clinical relationships, drug patient submissions, and the delivery of programs and services. As Vice President of Programs and Services, Marie-Helene provides overall strategic and operational direction for all elements of MDC’s programs and services, as well as the French stakeholder relations.

What was your first job? And, how did it prepare you for your role at MDC?

My first job was a project officer at a women’s centre. I had just finished my degree and I was really interested in feminism. I worked on women’s empowerment. I interviewed business women, created a resource guide for women wanting to start a business, and I organized a one-day symposium for 200 participants. This job prepared me to take initiative, do presentations in front of various audiences, prepare for meetings, and negotiate with different stakeholders. Most importantly it taught me how to get organized. I still use all these skills at my job 25 years later!

Dr. Homira Osman joined Muscular Dystrophy Canada (MDC) in 2019. She is trained as an audiologist-scientist and knowledge translation specialist. Homira holds an Honours B.Sc. in Neuroscience and Population Health from the University of Toronto. She earned a clinical doctorate and a PhD in neuroscience from the University of Washington (Seattle), followed by a post-doctoral fellowship at the Hospital for Sick Children in Toronto. At MDC, Homira works closely with persons with lived experience, physicians, allied healthcare professionals, researchers, academic, community and industry partners to engage, learn and share in knowledge generation, synthesis, and mobilization and ensures that evidence turns into action. Homira also oversees the Public Policy portfolio where she engages with officials in the federal and provincial governments to represent the voices and experiences of people living with neuromuscular disorders (NMDs) and ensures meaningful engagement between patient advocacy groups and government, drug regulators, pharmaceutical companies and community partners.

As Vice President of Research and Public Policy, Homira delivers strategic and operational leadership for all elements of MDC’s research portfolio, knowledge translation, clinical relationships and advocacy work. She acts as a key facilitator between members of the Canadian neuromuscular research and clinical community. Homira is also an investigator at the Neuromuscular Disease Network for Canada (NMD4C), serves on the Canadian Institutes of Health Research Community of Practice in Peer Review Steering Committee and is a member of the pan-Canadian Disability Coalition.

What is your favourite part about working at MDC?

MDC has afforded me the unique opportunity to work closely and collaboratively with persons affected by NMDs, physicians, allied healthcare professionals, researchers, collaborators, policy decision-makers, federal and provincial governments, academic-, industry- and community partners to engage, learn, share and positively influence change. It is exceptionally rewarding to contribute to the collective effort of a strong, resilient, supportive and passionate team and community.

Jennifer Williams joined the Muscular Dystrophy Canada (MDC) Executive Leadership Team in 2021 to oversee fundraising strategies; build upon our roadmap for growth and enhance MDC’s donor experience. A graduate of Western University with an Honours Bachelor of Arts (Philosophy), Jennifer also holds a Certified Fundraising Executive (CFRE) designation. She is an active volunteer with AFP Greater Toronto and AFP Quebec where she lends her expertise as an instructor of the Fundamentals of Fundraising and CFRE Review courses. Jennifer is a seasoned fundraiser with more than a decade of experience in education and healthcare fundraising. An accomplished leader in major gifts and planned giving, Jennifer has played an integral role in all aspects of development and community engagement for Branksome Hall, the Lawrence S. Bloomberg Faculty of Nursing, University of Toronto and the Temerty Faculty of Medicine, University of Toronto.

Who do you admire or look up to, and why?

I admire my mom. I’ve learned so much from her about the importance of genuine personal connection and authentic leadership. She is compassionate, empathetic, brilliant and exemplifies my current favourite quote, “Be curious, not judgemental” (from Ted Lasso). I’m lucky to have such an incredible role model.

Kevin Harrison has been an advocate for the disabled community for over 20 years in various fundraising roles for disability organizations, such as the Action Centre and Muscular Dystrophy Canada. As someone with muscular dystrophy, Kevin has brought both the perspective and daily challenges faced by those living with a physical disability to corporate boardrooms nationwide through speaking events, the media, and the general public. His passion and drive to bring awareness to these challenges resulted in the initiation of various programs and fundraising campaigns.

What was your first job? And, how did it prepare you for your role at MDC?

I grew up dreaming to be a stock broker. My dreams came true after university when I was recruited to join an investment business in Montreal, RBC Dominion Securities. I learned all kinds of things about relationship building, the economy, networking, and sales. I stayed there for three years when I realized that my passion in life was to raise funds for a not-for-profit. All of those skills I learned I was able to apply here at my job at MDC.

Pamela has more than 20 years working in the not-for-profit sector where she has and continues to develop her skills in fundraising, event planning, volunteer management, and strategic planning. Her earlier jobs in sales taught her about the importance of customer service and some experience working in TV production taught her to troubleshoot and problem solve quickly. Pam has a Bachelor of Arts Community Studies Degree with a Major in Communication, but believes it can be our life experiences that teach us the most about how we communicate and treat others.

What is your favourite part about working at MDC?

Working for Muscular Dystrophy Canada has allowed me the opportunity to watch the organization evolve over the years. I have been able to witness firsthand the impact that a grassroots organization can have in local communities as well as across our country. Working for an organization that is known for being the charity of choice for Canadian Fire Fighters is not only a privilege, but is something all of us at MDC are truly proud of.

Jeff is a quadriplegic diagnosed with Spinal Muscular Atrophy at 10 months of age. More than 40 years later, there is no slowing him down. Jeff holds a graduate degree in human resources and is a chartered professional in human resources. He also has managed several strategic initiatives. Jeff raises awareness of what it’s like to live with a neuromuscular disorder, raising funds, and striving daily to engage others in the work of Muscular Dystrophy Canada. Outside of work, Jeff is a role model and advocate for those with disabilities. He has been the chairperson of the premier’s council on the Status of Disabled Persons, and past president of the Saint John Ability Advisory Committee.

Who do you admire or look up to, and why?

I look up to my parents, Bill (deceased) and Sharon Sparks. My parents always encouraged me to not be limited by my disability. From a young child, they pushed for full integration into education, kept me actively engaged in extracurricular activities and continuously supported my independence (working a summer job away from home and moving to Toronto to begin my career). They did all of this when inclusion wasn’t an everyday word. Parents of children with disabilities can learn so much from their persistence, focus on ability, and them pushing me to be an active community member.

Danya joined Muscular Dystrophy Canada (MDC) in 2015 and has been a strong leader within the organization. As the Director of Programs and Services, Danya oversees the operational aspects and delivery of programs and services. This includes the System Navigation program that enables service specialists to work with individuals and their families, as well as health care professionals to navigate complicated systems to access the right resources to enhance the quality of life for people affected by neuromuscular disorders.

What is your favourite part about working at MDC?

It’s hard to pick just one part, as this organization has so many amazing aspects that I love about working here! If I had to pick one, I would say the people. What I mean by that is not only the amazing clients and stakeholders we get to work alongside every day but also the brilliant team that works within MDC. It is rare to have a wide spread national network that still has a family feel and MDC brings that to not only our clients but our staff as well.