Volunteer Spotlight

Dr Patricia Lima

Dr Patricia Lima is a Fire Fighter and MDC Chair with the Athens Fire Department, and a health scientist at Queen’s University. She is also the recipient of MDC’s 2023 Provincial Champion Award for Ontario and Nunavut. She works with MDC staff on fundraising, advocacy and research, which influences BIG positive changes for the neuromuscular community!

• Why do you volunteer with MDC?
  The Athens Fire Department (AFD) has a long history with MDC, which we have been supporting since 1977. I took over MDC activities when I joined the AFD in 2017. Initially, I felt it was just the right thing to do. As I learned about the importance of MDC for thousands of people affected by neuromuscular disorders (NMD), I have dived into the task of helping MDC. I could not describe a better reason to volunteer with MDC than their tagline “ignited by passion, fueled by hope”. Knowing the positive impact Fire Fighters and volunteers have with the neuromuscular community, the question would be: “How can I not be motivated to stay involved”.
• What has been your most rewarding experience with MDC?
  Participating in the 2023 Champions of Change conference allowed me to meet people affected by NMDs. As I learned their stories at a personal level, it changed me forever. I am a better person now because I learned a lot about humankind! Particularly, I know now how resilient and kind we can be one to another, and how we are stronger together. I plan to join the Champions of Change event again in the future, and learn about new ways to help MDC from people affected by NMDs, MDC staff and other Fire Departments.
• What do you enjoy most about volunteering with MDC?
  In our Fire Department, volunteering with MDC means team building, cooperation, laughs and community interaction – those are things I enjoy the most. One hundred percent of ADF Fire Fighters help raise money for MDC, and this is fantastic! Last year, we challenged the Athens community to donate for MDC while dunking Fire Fighters in a tank, on a cold day! There was an amazing turnout of volunteers! We grew as a team and created a bridge between our community and MDC. Another thing I enjoy when volunteering with MDC is interacting with the outstanding and kind people working for the organization.

Meet Marilyn Watson, one of our most enduring volunteers

Marilyn has been volunteering with MDC since 1981. She has been involved in Walk and Roll events and our Great Vancouver Chapter. Her wealth of experience and knowledge was a valued resource to the Walk and Roll committee. Her commitment and efforts in building awareness is the true essence of a veteran volunteer.

“I started volunteering with MDC when I found out that my son, then four years old, had muscular dystrophy. My husband and I did not know about this disorder, so it was a shock when we found out that our son was to be in a wheelchair at 10 years of age, and would die in his 20’s. I used to cry. But we were blessed to have Greg, and he lived until he was 29.

Initially, I joined MDC’s Greater Vancouver Chapter where I eventually became co-chair. It was good to know others with similar conditions. We made good friends, who were also involved with MDC for themselves or their children, and we all helped each other with our events and fundraising. My most rewarding experience was receiving the Queen Elizabeth Jubilee Medal for my work at the Vancouver Chapter and representing MDC on a Government Task Force on home care.

I stay involved because I feel the need to provide any help I can to support the neuromuscular community. I sincerely hope that in the future, cures will be found for all types of NMDs so that all persons affected can benefit from a life free of symptoms.”

Meet David Cluff, the Treasurer of MDC’s Board of Directors:

David has been a committed volunteer for Muscular Dystrophy Canada, offering his time and dedicated expertise since 2011, and has been involved in MDC’s Finance, Audit and Risk Management Committee and Board of Directors.

As a Chartered Professional Accountant, David is truly instrumental in guiding MDC through periods of growth, helping steer the organization with advice and contributions in the areas of finance, human resources, risk management and overall governance. David is a long-time supporter who contributes to the Walk and Roll for MDC among other philanthropy initiatives. David was selected as the 2023 recipient of the Mary Anne Wickham Award for Volunteer of the Year for his valued contributions.

When asked the following questions, this is what David had to say:

• Why do you volunteer with MDC?
  It is an opportunity to apply my skills and experiences in an organization that is meeting a definite need, has a loyal base of support for its work, believes strongly in accountability and has a well-defined vision for the future.
• What has been your most rewarding experience with MDC?
  Seeing MDC emerge from Covid, re-energized, on a sound financial footing, and with a clear focus on the directions it wants to take in its client services, research and advocacy activities.
• What motivates you to stay involved?
  Seeing the positive reaction of individuals affected, partners and health professionals to all our activities. MDC has immediate impacts on the lives of individuals dealing with NMDs, both in the short term and in the long term.

Elisa Lapadula

“My experience volunteering at MDC so far has been nothing short of amazing. I have had the pleasure of working alongside a group of experienced and talented professionals within the Research and Knowledge Translation team, who have all played a critical role in helping me develop my science communication skills and creative edge.

As an aspiring genetic counselling student, I wanted to gain more experience working with individuals affected by genetic disorders, specifically neuromuscular disorders. Understanding how research and advocacy plays a significant role towards providing programs and services that will support and enhance the lives of those affected with neuromuscular disorders was a primary goal of mine when I first volunteered; however, overtime I gained so much more. Listening to individuals talk about their personal experiences and seeing the endless work that goes into implementing change helped me truly understand the adversity so many individuals strive to overcome.

“Empathy has played a major role in helping me to actively understand the experiences and perspectives of others. It has helped me build strong connections with individuals while working towards a common goal as well as transform my own life experiences. I am incredibly grateful for the opportunity to volunteer at an organization as influential and special as MDC.”

Dr. Ronald Worton

Dr. Ronald Worton knows firsthand the importance of funding neuromuscular disorder research to continue to find answers for the neuromuscular community. With four decades as a medical research scientist and scientific leader in the field, Dr. Worton’s research focused on the genetics of human disease, his most important work being the identification of the gene and protein product that is defective in children with Duchenne muscular dystrophy.

Dr. Worton is a longtime supporter of Muscular Dystrophy Canada, as a volunteer in a number of capacities since 1985 including a term on the Board of Directors from 1996 to 2001. Dr. Worton has stepped up many times to support the neuromuscular community in Canada including serving as the honorary chair for the 2022 Walk4MD. He looks forward to connecting with researchers, clinicians, and community members across the country.

Thank you Dr. Worton for being a trusted, reliable source of support, information and for always doing whatever you can for the Canadian neuromuscular community.

Vicki Stafford Mullin

“My attitude makes me unique, my disease makes me rare” is a quote that Vicki Stafford-Mullin lives by. We’re very grateful at Muscular Dystrophy Canada to have her as a volunteer.

Vicki is very active in participating in the Walk4MD, attending fundraising events and raising money for those affected by neuromuscular disorders through her beautiful handmade ornaments. Vicki started making ornaments for her friends and family in 2017. She saw it as a way to raise awareness and funds for a great cause. She spends a lot of her time handcrafting the custom ornaments and can take one week to make 15 ornaments. That is dedication!

She and her husband Dean, donate all the supplies and dedicate their time to making the ornaments, so 100 per cent of the profit goes to MDC to support Canadians. They have raised over $40,000 in the past 5 years with help from their family, friends and co-workers!

Vicki has also been an active volunteer with the Fundy Chapter for many years, supporting communications with family members. She says she will continue to raise awareness and funds until there are cures to help herself and others who have neuromuscular disorders.

Having a neuromuscular disorder has made her appreciate every day and the little things in life.

Dr. Colleen O’Connell

Recipient of the 2021 Outstanding Healthcare Partner Award

Meet Dr. Colleen O’Connell, MDC’s 2021 recipient of the Outstanding Healthcare Partner award. This 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.

Dr. O’Connell is a Physiatrist at the Stan Cassidy Centre for Rehabilitation in Fredericton, NB. She holds faculty appointments in Dalhousie’s Faculty of Medicine and the University of New Brunswick’s Faculty of Kinesiology. She is the founder of Team Canada Healing Hands, which provides volunteer rehabilitation care and education in Haiti and other under-resourced areas.

In the past year, Dr. O’Connell supported MDC’s knowledge translation and change agent initiatives. Particularly, Dr. O’Connell supported MDC with gathering, summarizing and sharing up-to-date information relating to COVID-19, specifically as it pertains to NMDs. She also advocated on behalf of patients with NMDs to receive prioritization for vaccination. She presented at our #LetsTalkNMD webinar on a nation-wide study on adult outcome measures for SMA earlier this year, and is currently the chair of Transition of Care in DMD at our upcoming conference.

Thank you Dr. O’Connell for your exceptional support of the Canadian neuromuscular community.