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Archive: September, 2016

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Fire Fighters on their connection to the MDC community

September is Muscular Dystrophy Awareness Month, and no one helps us spread awareness of neuromuscular disorders like our clients and our close friends, the Fire Fighters of Canada.  

roundsticker_EFire Fighters share a unique and special bond with both Muscular Dystrophy Canada, and the Muscular Dystrophy Association in the United States of America. In the same year MDC became an organization, 1954, the IAFF resolved to support muscular dystrophy associations to help make their campaigns a success.

Today, we are still working together providing support and funding for assistive devices, and research towards a cure. We asked our Fire Fighter friends from across Canada to describe their connection to MDC and those living with neuromuscular disorders:

“I am one of the co organizers of our Dauphin Fire Department Rooftop Campout for Muscular Dystrophy.  I am inspired to see families affected by muscular dystrophy overcome their challenges and live life to the fullest. I am proud to be part of this team, and I will continue to fight alongside Muscular Dystrophy Canada until a cure is found.  I started this because I knew our Department, Members and Community would stand behind it.  We help people, and those that need our help we step up for them.  I am honored to be able to make a difference.”

Robbie Tomkins

Dauphin Fire Department – MB

 

“I started fundraising for Muscular Dystrophy when I joined Tumbler Ridge Fire Department. Through the years, seeing the positive outlook and courage to overcome so many obstacles people with neuromuscular disorders face keeps me motivated to continue to fundraise until there is a cure. Their never give up attitude when faced with these challenges has shown me to never give up when faced with my own.”

Diana Vandale

Tumbler Ridge Fire Department

Northern Region Advisor – BC/Yukon

 

“Tradition, commitment and hope are words that I use to explain to people what our relationship is with Muscular Dystrophy Canada and those affected by neuromuscular disorders. The fire service took on a commitment in 1954 to support this charity. We will continue to fundraise, be advocates and support them, with the hope that a cure will be found. Great strides have been taken allowing people with neuromuscular disorders to live better quality of lives. I’ve had the opportunity over the last 15 years to attend conferences, events & meet the people and families who are affected by neuromuscular disorders. Their positive attitude and outlook on life inspires me to continue our efforts. Listening to the researchers, I know that day is on the horizon. Together we can make muscles move!”

Captain Bob Patton

Nelson Fire Rescue

Nelson PFFA Local 1343

BC/Yukon Advisor

BC Rep NFFRC

 

“I started doing this work, and continue to do so, because of the people I have met.  Some of the people I drove early in my career, passed away at an early age; now I have many friends affected by neuromuscular disorders, some well into their adult lives. I like to think the work of all the Fire Fighters makes a huge difference for those affected by making it easier for equipment to be funded and for researchers to work at searching for a cure.

The people I have met – those affected by neuromuscular disorders, their families, other Fire Fighters, staff, board members, researchers and volunteers – have all made me a better, more compassionate, and focused person. Leana and I even rode our motorcycle across Canada this year, which we probably wouldn’t have done if I were not attending the Atlantic Fire Fighters Conference during Youth In Action Atlantic.

After over a decade of fundraising for Muscular Dystrophy Canada, two of my siblings were diagnosed with muscular dystrophy, so the quest for a cure continues.”

Kerry Zado

Langford Fire Rescue

Lower Vancouver Island Region Advisor – BC/Yukon

National Fire Fighter Relations Committee Chair

 

“I started supporting Muscular Dystrophy Canada before I became a Fire Fighter when I would help my Dad and other members of the Fire Department with the Annual Boot Drive.

When I became a Member of Ladysmith Fire/Rescue, I took a full and active role in the fundraising and eventually was asked to represent the Department at the Annual Conference and Banquet in Vancouver. That weekend changed my life. That weekend listening to clients share their stories and relay how the Fire Fighters have impacted their lives made an immediate impact. I approached the Fire Fighter Advisor for my region and said, ‘If there is anything I can do to help just let me know!’

I became convinced that no matter what we did we needed to do more, and started working on ways to increase our efforts in both fundraising and raising awareness. Ladysmith Fire/Rescue still has it Annual Boot Drive, and now we also have a booth at our town’s annual Christmas Festival of Lights, as well as a Haunted House for Halloween. We are also major supporters of the Walk for Muscular Dystrophy in our area, which I am also the local coordinator of. I have had many great opportunities since becoming involved with Muscular Dystrophy Canada, but nothing compares to the friends I have made with the people within this organization, fellow Fire Fighters, employees, and clients alike.”

Dwain King – Ladysmith Fire/Rescue

 

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Stan Cassidy Centre for Rehabilitation

stan-cassidy-centre-logoAdjoining the Dr. Everett Chalmers Regional Hospital in Fredericton, New Brunswick, is the Stan Cassidy Centre for Rehabilitation. This facility is a leader in neurological rehabilitation, taking an interdisciplinary healthcare team approach to providing their patients with the best care.

Patients  from New Brunswick and Prince Edward Island of all ages, and complex paediatric patients from Nova Scotia are  seen at SCCR. It is one of two rehabilitation facilities in Canada that cares for patients through their entire  lives. The medical and therapeutic teams provide  services via five avenues: in-patient, out-patient, tele-rehab, outreach and expert consult.

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Update: Respiratory Care Seed Grants

lungs

Muscular Dystrophy Canada has made it a priority to support research into areas that affect the quality of life of people living with neuromuscular disorders. One of the key issues that impacts on quality of life is respiratory health.  Through its focus on Respiratory Health, Muscular Dystrophy Canada has produced evidence-based resources such as The Guide to Respiratory Care for Neuromuscular Disorders, which is used by patients, families and clinicians across Canada and internationally to help guide care decisions.

Through the Seed granting process, Muscular Dystrophy Canada is supporting research projects that focus on enhancing respiratory health and quality of life in a range of neuromuscular disorders. The Seed granting process is now in its third year, with a number of new proposals currently being considered by a panel of expert reviewers. The results of this research will guide evidence-informed care, and will contribute to the timely and efficient translation of innovations from the research setting to patient care settings. Please stay tuned to the website this fall as we announce the successful projects!

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How I See It: How to use your voice

IvanaIt takes a lot of courage to speak out for what you believe is important. I’ve learned it is definitely something most of us need to practice more because if not us, who? Whether it be at work, at school, on public transport, or at the hospital. If you want something to change – you need to be that voice.

You need to decide what you want to speak up about and how you are going to do it. Stephen Hawking once said that you must concentrate on the things your disability doesn’t prevent you from doing well, and don’t regret the things it interferes with. I believe we all have the power to do something positive. Don’t ever be afraid to raise your voice, especially for honesty and compassion.

I get a million ideas in my head all the time. I am constantly talking to my family, “Well what if I do this?”. I want so badly to influence, to change, and to be a strong voice. I believe I was given this life not to suffer, but to inspire.

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The 53rd IAFF Convention

Fire Fighters from New Brunswick stop by the MDA / MDC booth

Fire Fighters from New Brunswick
stop by the MDA / MDC booth

It was during the 1954 IAFF Convention in Miami, Florida, that Resolution No. 53 Re: Muscular Dystrophy was submitted by the IAFF Executive Board.  It was at that same convention where the following was adopted unanimously by the IAFF Convention:

“Resolved, that the delegates assembled in this convention of the International Association of Fire Fighters sponsor the 1954 campaign of the Muscular Dystrophy Association; and be it further resolved, that a copy of this resolution be forwarded to all locals and that all officers and members be urged to cooperate in every way to make this campaign a success.”

On August 15th – 19th, 2016, the 53rd IAFF Convention took place in Las Vegas, Nevada and Muscular Dystrophy Canada was honoured to be present.  Fire Fighters were encouraged to stop by the MDA/MDC booth so staff could thank them for their partnership and support, and thank them for changing the lives of those affected by neuromuscular disorders.

 

 

A highlight for the Fire Fighters was when the MDA 2016 National Goodwill Ambassador, Joe Akmakjian spoke to the Fire Fighters.  Joe is the first adult to take on this role and he told the Fire Fighters, “these aren’t just children’s diseases anymore and Jerry’s kids are growing up and you have all worked hard to make that happen”.

Last year IAFF Canada raised $1.4 million for Muscular Dystrophy Canada and those affected.  107 Locals showed their support by organizing  Fill the Boot events, Rooftop Campouts and Ladder Sits, sporting events as well as other fundraising initiatives.

We want to thank IAFF Canada, its staff and all of its members for their past and present support, and we know we can count on you in the future.

Joe’s speech –

 

Joe and Pam

Joe and Pam

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Pamela Musgrave is the Director of Revenue in Ontario and Nunavut for Muscular Dystrophy Canada. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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