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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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World Duchenne Awareness Day – Watch One Family’s Journey

When their two sons Ross, 20, and Finn, 16, were diagnosed with Duchenne Muscular Dystrophy (DMD), Michelle and Steve Beaulieu decided their family would remain the adventurous travelers they’ve always been. The family’s journey – from diagnosis to next destination – is a story of determination and what life is like for its two youngest children who rely on life support ventilators.

September 7 is World Duchenne Awareness Day. Please take some time to watch this video and see how this family sustained their love of adventure in the face of this challenging disease.

 

Awareness 2015: Be Inspired

September is Muscular Dystrophy Awareness Month! Here we are going to highlight some of our wonderful Walk for Muscular Dystrophy Ambassadors:

GwenGuinevere (Gwen) Warner is a sixteen year old girl with congenital myotonic muscular dystrophy. Gwen was born a couple of months too early, and was unable to breathe on her own at birth. She spent three and a half months on a respirator, and her first eight months living in the NICU at RUH Saskatoon, and she was not “supposed” to ever leave the hospital. At the time, we were told she was the “most severely afflicted child they’d seen who’d lived”.

Gwen’s had many difficulties and challenges in her life, but despite all of that Gwen is a very happy girl. She gives us reasons everyday to appreciate life. She shows us lots of smiles, and gives us lots and lots of hugs and kisses. It’s easy to spoil her because she’s such a loving kid. We home school Gwen, and just like other young kids, Gwen is learning about sharing. So there will be a sharing time when Gwen has to tolerate other family members using the television as well. Which is asking a lot, because watching Netflix is one of Gwen’s biggest sources of happiness. She loves watching Dora the Explorer, Barney, Angelina Ballerina and Leap Frog. But Dora’s Fairy Tale Adventure, in which Dora needs to turn into a True Princess to save her friend Boots by giving him “the biggest hug ever” is her all time favourite. We’re pretty sure that Gwen thinks she’s a True Princess too, and we don’t disagree! When it’s sharing time and it’s her siblings turn to watch, Gwen’s learned that it’s usually pretty easy to get a few minutes more of Dora by demonstrating “the biggest hug ever” on them!

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MuscleFacts creates lasting partnership with the Champlain School

Students of Miss. Beaudoin's class

Students of Miss. Beaudoin’s class

For the past several years, Muscular Dystrophy Canada has been organizing an awareness program called MuscleFacts for schools and families. This program aims at creating more welcoming school environments for people who have a neuromuscular disorder and works to promote a better understanding of what a disability is. Through interactive presentations, games and activities, this program helps children understand what physical disabilities are and helps educators efficiently integrate children with a disability by breaking down barriers, one class at a time.

On average, Muscular Dystrophy Canada gives about 50 MucleFacts presentations per year. These visits often mark the beginning of a wonderful partnership, like the one with the Champlain School in Sherbrooke, in the beautiful province of Quebec.

 

Alexis Boisvert with mother and brother

Alexis Boisvert with mother and brother

Alexis and his school

The Quebec Services Team went out twice to meet the students at Alexis Boisvert’s school. Alexis is a 10-year old boy who suffers from Steinert’s myotonic dystrophy. Afterwards, Alexis’ special education teacher contacted us because the school wanted to participate in the Halloween fundraising – where each child in the class is given a little piggybank to take with them on Halloween night to ask for small change donations. The school raised a little over $700.

The Christmas Market

But the ChamplainSchool didn’t stop there. Third-grade students from Ms. Lorraine Beaudoin’s class carried out a project that would allow the students to give back to their community. Since all the students know Alexis well, they decided to organize a Christmas Market, with the proceeds once again going to Muscular Dystrophy Canada! They all chipped in and created holiday decorations. They also

Students of Miss. Beaudoin's class

Students of Miss. Beaudoin’s class

asked other classes to participate and to provide various pieces. The Christmas Market was held on December 12th and raised $1,165.

By taking part in all these activities, students and teachers at the ChamplainSchool helped Muscular Dystrophy Canada fulfill its mission. But beyond raising funds, the focus was on involvement and awareness. The school and its teachers coached future adults who, through that experience, will be more aware and more inclined to get actively involved in their community and to help others… which is very worthwhile!

Many thanks to the Champlain School for helping make muscles move!

 

Learn more about MuscleFacts here: http://ow.ly/JxbwT

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Through my eyes…

June BlogThere are many times, especially when I meet new individuals or even when I am having coffee with my closest friend, that I find myself searching for answers. How am I going to explain this? It’s one of the hardest questions I need to answer, and to this day my answers are always difficult to produce.

When you sit back and you have time to reflect, you may think about your life. This one life you have. You think about why this battle chose you and how every single day for the rest of your life, you’re going to be fighting. That’s hard to accept, it’s one of the hardest things to accept. So let me try and explain to you, the best way I know how, what this battle really is.

Slowly, I was starting to notice differences as I was getting older.  A feeling in the pit of my stomach; something was missing and I might never be able to replace it. Something was happening and nobody could tell me what. A code that nobody seemed to be able to crack. Then there are the thoughts of what am I going to tell you? What happens when I tell you who I am? Would you turn your back on me?

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