Read the Bissonette’s Story

Archive: November, 2014

Categories

Recent Posts

Tags

Archives

Courage and Determination

By Our Side

70s  FF kids 86 ambassadors-1All too often, when help is needed, residents turn to their local, trusted Fire Fighters—and they always come through. Perhaps that’s why, more than 60 years ago, a Massachusetts’ father of two children affected by muscular dystrophy, asked his local Fire Fighters for assistance.

Back then, George Graney of Fire Engine Company 1 in South Boston rounded up 20 Fire Fighters for a door-to-door campaign that yielded $5,000 for the Crowley family. Owing to his imagination and vision, Graney realized the Fire Fighters could do so much more. He approached the International Association of Fire Fighters (IAFF) with an idea. Today, Fire Fighters raise funds and public awareness about muscular dystrophy on an international level.

Here in Canada, Arthur Minden, co-founder of the newly formed, Muscular Dystrophy Association of Canada, noted the high public regard for Fire Fighters. Minden reached out to volunteer and career Fire Fighters for assistance. Their dedication to fundraising and enhancing public awareness of neuromuscular disorders continues to be our community’s single-most important source of revenue. Over the years, Fire Fighters have raised $76 million for research, services and advocacy for people living with muscular dystrophy.

FFInitially, these courageous men and women start fundraising for muscular dystrophy because it’s a tradition. Over time, they realize they’ve become involved in so much more than a charity of choice. They look beyond the neuromuscular disorders and the wheelchairs—and get to know the individuals, the families and our community. Long-term Board member, Kelly Zacharias, refers to his own volunteer contribution to our community as “my food for the soul.” The Smithers, B.C. Fire Rescue, Deputy Fire Chief adds, ”As you become more involved, you look at the person, not the disability or the chair.”

Each year, Fire Fighters (and their families and friends) from 800 Fire Departments and Associations across Canada, connect to brainstorm community event ideas. They look forward to offering hope and inspiration, sparking public interest and prompting people to give generously to the cause. And each year, since 1954, the Fire Fighters have come
through for Muscular Dystrophy Canada.

__________________________________

This article is a part of the 2013-2014 Annual Report. To read more, please click here.

Tags:
Posted on:
No Comments »

Leaders In Self Determination

CoughAssistE70_ToddlerBedtime_CKHiLgIn April, thanks to Muscular Dystrophy Canada’s initiative and teamwork on respiratory care, the Ontario Ministry of Health and Long-Term Care announced increased funding for CoughAssist™ devices.

Now, eligible individuals, including those affected by neuromuscular disorders, have wider access to this vital equipment through the Ministry’s publicly funded Ventilator Equipment Pool.

“The right treatment at the right time can improve quality of life,” explains respiratory therapist, Faiza Syed of Toronto’s Hospital for Sick Children. “There’s less suctioning between treatments, less overnight suctioning and a decrease in infections and hospitalizations. Parents and caregivers sleep better. Patients feel better, have more energy.”

Says Stacey Lintern, Executive Director for Ontario and Nunavut: “Progressive muscle weakness can put both adults and children at risk for respiratory failure.” She continues, “Access to these devices will help prevent unnecessary complications and promote healthy and active lives for adults and children affected by neuromuscular disorders.”

Although the Ontario announcement shows progress, there is still much work to be done. In some cases, individuals affected by neuromuscular disorders who live outside Ontario will continue to pay for a $5,500 to $7,500 CoughAssist™. These individuals, affected by weakened respiratory muscles, often turn to Muscular Dystrophy Canada for financial assistance.

Over the past two years, Muscular Dystrophy Canada has invested resources aimed at providing all Canadians with neuromuscular disorders with better access to respiratory health information and services. We conducted a series of regional, inperson information sessions on respiratory health and options for care. Along with the expertise of our team members, we produced a strategic report for government officials and decision-makers. As an instrument for change, this report identified gaps and opportunities in education, service, advocacy and research. It also recommended a leadership role for Muscular Dystrophy Canada with a focus on action priorities.

This year, with the contributions of health care content experts across Canada, we compiled and published a Guide To
Respiratory Care for Neuromuscular Disorders. This informative handbook for clients and families is also available online and published in English and French.

_______________________________

This article is a part of the 2013-2014 Annual Report. To read more, please click here.

Tags:
Posted on:
No Comments »

Holiday Ornament Campaign

The holiday season is a busy one for most people, and this is especially true for the Béland family, who spend many hours championing the Muscular Dystrophy Canada Holiday Ornament Campaign in Ottawa. The Holiday Ornament Campaign for Muscular Dystrophy Canada started in 1996, and the Béland family has participated in selling ornaments to raise funds since that year.

aholidaytraditionThe Béland family have been involved with Muscular Dystrophy Canada since J.P. was diagnosed with a neuromuscular disorder. J.P, his wife Françoise and son Luc have all been dedicated volunteers for many years. Leading up to the holidays all their family members get involved in the Holiday Ornament Campaign. The Ottawa Chapter is the biggest seller of holiday ornaments; they raise $25,000 annually!

The family organizes sales at government buildings, supermarkets, banks and other locations in their community. Françoise explains that the family starts making connections in January for selling at the end of that year. It’s a year round endeavor for the Bélands.

The ornament campaign is important to the Béland family because they “know that [they] make a difference in the life of thousands of Canadians who are affected by muscular dystrophy”. In addition to actively selling the ornaments it gives the Bélands an opportunity to create awareness, educate people about muscular dystrophy.

IMG_0767Françoise explains, “The ornament campaign has allowed the Ottawa Chapter to meet thousands of people, sometimes newly diagnosed clients to whom we can give valuable information. We have also educated people about neuromuscular disorders. We have fact sheets on the table at all times. Being visible in the community has been an excellent way to create awareness.” The family promotes the benefit of purchasing the ornament: a gift and a donation to Muscular Dystrophy Canada.

A new design is created every year and each specially designed ornament displays the three puzzle pieces from Muscular Dystrophy Canada’s logo. The ornaments are a unique gift idea, and the proceeds go to support Muscular Dystrophy Canada’s mission. One of Françoise’s favourite suggestions is to attach the ornament to a bottle of wine as a hostess gift. The hostess gets a keepsake and you’ve supported a great cause!

Be one of the first to scoop up this year’s holiday ornament! Visit muscle.ca/ornaments

Tags:
Posted on:
No Comments »

Rick Mills: An Example In Dedication

IMG_2048My involvement with Muscular Dystrophy Canada began way back when I was still in high school – that’s when my youngest brother was first diagnosed with Duchenne muscular dystrophy. It was during the late ‘70s and early ‘80s, but I still remember how hard it was to watch my brother go from a normal child to one who required a lot of assistance. It was made even more difficult by fact that, in those days, the treatment was totally different than it is now. He went from walking, to braces, to a wheelchair. My brother passed away at the age of 17. That just wasn’t right.

I joined the Fire Service in Richmond Hill, Ontario in 1984 as a volunteer Fire Fighter, where I helped out with some fundraising for Muscular Dystrophy Canada. I became a career Fire Fighter in 1988. That first year, I was told by my captain to go to the local mall for three days and collect money in a boot for MDC. I enjoyed the experience, and talking to all the people, and started to realize that this was a great way to collect money.  That first time alone, I raised $3000 – and I have never looked back since!

F1000025 I made my first cheque presentation during the Jerry Lewis MDA Labor Day Telethon in 1990. The following year, I was asked to become a Fire Fighter Advisor. I accepted, and was then made Campaign Chair for the Fire Fighters in both 1992 and 1993. My photo appeared on campaign posters along with some famous celebrities like Doug Gilmour from the Toronto Maple Leafs and Mike Timlin from the Toronto Blue Jays (who was part of the World Series winning team of 1993). For the next couple of years, I actually hosted the telethon, until it was taken off the air in Canada.  During that time, I really enjoyed the experience of meeting other Fire Fighters from various departments around Ontario when they presented their cheques on the telethon.

DSC03167From there, I was appointed Chair of the Ontario Fire Fighter Advisors, a position I held for six years. This gave me the opportunity to travel to Fire Fighter Advisor conferences across the country, in cities including Quebec, Winnipeg, Edmonton and Richmond, B.C. I became a member of the National Fire Fighter Relations Committee and then Chair of the Committee. This led me to join the Board of Directors, where I became a Vice-Chair, then Chair of the Board – a position I had always hoped to aspire to because of the great work the board does, and the people it works for.

The Fire Fighters do a tremendous job – I am honoured to be part of such a great team of fundraisers. It’s important to note that I am only one piece of the team; there are so many Fire Fighters who deserve to be recognized – from the small volunteer departments to the big career departments. Big or small, we all do this because we care.

I’ve enjoyed being involved with the Muscular Dystrophy Canada team for many years, and will continue to donate and fundraise because it’s an important part of who I am. I’ve met so many wonderful clients and families over the years, and it’s always great to see their smiles when they finally get to put a face to the team.

 _________________________________

Rick Mills is a Captain in the Richmond Hill Fire and Emergency Services. Rick’s career as a Fire Fighter began 30 years ago. He is a proud father of two children, and a loving grandfather to his one granddaughter.  Rick served as a member of the Board of Directors for Muscular Dystrophy Canada, as well as a Fire Fighter Advisor.

 

 

 

Tags:
Posted on:
No Comments »

A Week in the Life: The Western Region Services Team

Here's Ted putting some things together for EIA back in August.

Here’s Ted putting some things together for EIA back in August.

“What exactly are you doing this week?”

It’s a question that we hear often, which is good because there is so much to do! To rise to the challenge and provide a better answer than just ‘information and referral’ services, Nate Schwartz (our main man on Vancouver Island) and I decided we would capture what were up to over a one week period.  It was fun to look back on how we are serving persons living with neuromuscular disorders and it’s our pleasure to show you some examples of our interactive and diverse days!

We were ‘out’ there to make those community connections. 

We truly believe that the lives of the people we serve are constantly changing and so we try to make as many community connections as possible.  Just last week Nate got in touch with a local physiotherapy clinic that needed some insight on how to provide better services to people living with a disability.  For myself, I was also asked to meet with various startup businesses on how they can make their services more affordable for people living on limited income.  These types of meetings are exciting to us as you get to see how so many different organizations are making a genuine effort to better serve our clients.

We connected people to our resources and community networks. 

If we don’t have the answer to your question, then we will find someone who does! Nate had a great opportunity connect a youth now starting his university experience with local campus resources and contacts.  I had the opportunity to work with a few educational leaders on how to connect their field staff with available MDC materials to improve their practice.

Nate (centre) with volunteers Debbie and George

Nate (centre) with volunteers Debbie and George

We supported our fundraising partners as “John(ies) on the Spot”!

Raising funds for our organization is a tough job and we value that service tremendously.  Last weekend the BC Services team had the pleasure of supporting the BC fundraising team during the annual provincial Firefighter Advisor Leadership conference.  We got to engage the firefighters, mingle with families, move tables and chairs, collect tickets and even install a raised toilet seat! It’s all in the name of team work—“You call, We haul”

We were constantly working behind the scenes so that others can succeed.

A great deal of the work we do in the community is a combination of hard work and preparation.  Nate’s an amazing motivator, so his webinar prep work and client follow up needs to be carefully thought out and planned. You just never know when someone will decide to kick it into high gear, so Nate always has to spend some time preparing to catch that lightning in a bottle!  For me, I’m working continuously to make sure conditions are optimal for the services staff so that they can be their own lightning in bottle.  Day in and day out, they serve our clients with grace, dignity and style, and it’s important to me that we provide them with that opportunity to be at their best with what we have.

So there you have it! It is equal parts of community engagement, team work, networking, planning and a 100% rock n roll.  If you’re curious about what we’re up to, just strike up a conversation with us and if you need a toilet fixed, we just might be able to take care of that too.

Cheers

 _________________

Ted Emes, Director of Services-Western Canada. To learn more about the services Muscular Dystrophy Canada offers, click here.

Nate Schwartz, Bridges to the Future Coordinator. To learn more about this unique program, click here.

Tags:
Posted on:
No Comments »
WP-Backgrounds by InoPlugs Web Design and Juwelier Schönmann