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Archive: February, 2015

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Rare Disease Day 2015

Jeff and his wife Heidi

Jeff and his wife Heidi

February 28th is Rare Disease Day.  As a person who was diagnosed with a rare disease close to 40 years ago, this day is very important to me and to thousands of other Canadians impacted by one of the over 150 neuromuscular disorders supported by Muscular Dystrophy Canada.  At the age of 10 months, I was diagnosed with Spinal Muscular Atrophy Type 1 (to be re-diagnosed as Type 2 later in life).  SMA is the world’s leading cause of infantile death; I bet you didn’t know that!  Forty years later, I’m still kicking and have no plans to slow down.  This is one of many reasons why days such as this, to raise awareness and provide education, are so vital to our health, well being and ability to be full and active participants in our communities.

Thanks to the work of Muscular Dystrophy Canada staff, volunteers, healthcare professionals, family members, researchers, caregivers and Fire Fighters, in the areas of support, education, advocacy, financial assistance, information delivery and medical research, people living with neuromuscular disorders are living longer, more enriched lives.

We all face challenges in our daily lives, but some of us face more than others.  Days like this which provide education and awareness, help to build knowledge within the general community and the community of those who are impacted by rare diseases and are key to promoting the importance of supporting organizations and people who are impacted, as well as maintaining healthy lifestyles and providing strategies to enhance independence!

Here are just a few examples why I feel Rare Disease Day is so important:

  • People are living longer…… this has a huge impact on our healthcare and social service sectors.  People are being faced with illnesses that come along with aging.  Having a disability complicates this and our healthcare providers need to be able to think outside the box and work in partnership with families and organizations such as Muscular Dystrophy Canada to develop strategies to manage these illnesses.  I was hospitalized for six weeks this past summer and if it wasn’t for my knowledge of how to take care of myself, I’m certain that my stay would have been much longer and my recovery would have been significantly more challenging.  Not only did I manage my recovery more effectively because of my knowledge, I also had a huge impact on the knowledge and understanding of the healthcare professionals who supported me during this difficult time.
  • Breath is vital to life…… Many professionals are unfamiliar with the challenges associated with respiratory care and neuromuscular disorders.  People who are impacted, their family members/caregivers and professionals need to be familiar with respiratory health protocols.  I personally have known several people who have gone into comas and worse because of inappropriate respiratory interventions.  Check out Muscular Dystrophy Canada’s Guide to Respiratory Care for Neuromuscular Disorders
  • People with disabilities are more than just their wheelchair….. Community members at large need to see the person first and what they have to offer.  If this happens, people with a variety of challenges will be more included in their communities; they can work, go to school, volunteer and even hang out at a local night club if they wish.  People just don’t understand what it takes to include people (the cost is actually minimal).  For example, I was recently married and am able to have a full and normal relationship, including all aspects (physical, emotional, spiritual and financial).  I also work full time and volunteer in various community roles.  Not only is highlighting these successes and obstacles important to the community at large, but also to people who are affected by disability in order to show them that their goals are achievable.
  • It is important to support smaller non profit and charitable organizations….. We all know someone who is impacted by one of the diseases that has high prevalence in our country and tend to support those same organizations over and over again.  These organizations should continue to be supported as they do great work, but it is my wish that people support smaller organizations as a percentage of their giving.  Every little bit helps and small organizations can deliver a huge bang for your buck, whether it be in research or service delivery.
  • We all need to work together….. As our diseases are so rare, we need to work hand in hand to provide direct peer support, networking opportunities, raise awareness, educate each other and our community and raise funds.  To learn more about how you can help yourself while helping others, visit www.muscle.ca

As you can see, there is so much that we can all do to raise awareness of rare disorders.  Take action today and help build a supportive community around you!

 _____________________

Jeff Sparks is the National Director of Volunteer Engagement and Organizational Development with Muscular Dystrophy Canada. He is a quadriplegic and relies on 24 hour attendant care, which he manages himself, for all physical activities of daily living. Diagnosed at 10 months of age with Spinal Muscular Atrophy Type 2, he was not supposed to live past the age of 2 years old. 39 years later, there is no slowing him down.  

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Oilers Alumni and Fire Fighters are Lacing Up Their Skates for Fire On Ice

Red:  Pat Beaulieu FireFighter Others: L-R:  Troy Farn, Councillor Gilles Prefontaine (St. Albert), Chief Ken Block Blue: Chris Joseph Alumni

L-R: Pat Beaulieu – Fire Fighter, Troy Farn, Councillor Gilles Prefontaine (St. Albert), Chief Ken Block, Chris Joseph – Oilers Alumni

Edmonton takes pride in their Fire Fighters and the Edmonton Fire Fighters take pride in supporting Muscular Dystrophy Canada.  This year to kick off the successful Rooftop Campout campaign, we will hold the 3rd annual Fire on Ice charity hockey game. The puck will drop on February 27th as the Edmonton Fire Fighters take the ice vs the Oilers Alumni.

The families of Edmonton and surrounding areas are passionate about hockey, which makes a charity hockey game particularly fitting to encourage the communities to open their hearts and their wallets. The main goal of the Fire on Ice event is to raise funds and awareness for Muscular Dystrophy Canada. Our next goal, to make the event as family friendly and exciting as possible as hockey lovers join us at the Leduc Recreation Center to cheer on the two teams of childhood heroes.

I ask my son, “What do you want to be when you grow up?” His answer is always, “A hockey player or a Fire Fighter!” So what a perfect combination for a charity event that is family friendly and encourages the positive message of giving back.

This is my first year on the planning committee for Fire on Ice and the joy of planning an event where the goal is for a positive cause is so rewarding. So whether you like Fire Fighters, hockey, a good cause or all three,  join us February 27th for Fire on Ice! 

14_Fire and Ice Profile picTickets can be purchased at fireonice.tickit.ca

Follow us on:

Facebook at Fire on Ice EFD Muscular Dystrophy

Twitter @fireoniceMD

Full Edmonton Oiler Alumni Roster
1 Joaquin GAGE
2 Chris JOSEPH
3 Craig TOPOLNISKY
5 Doug HICKS
7 David PELLETIER (Honourary Oiler Alumni)
8 Dwayne HAY
8 Dennis POLONICH
10 Nathan DEMPSEY
12 Mike BISHAI
20 Dave LUMLEY
21 Rich PRESTON
23 Sean BROWN
24 Kyle ROSSITER
27 Bruce HARDY
44 Rob BROWN
94 Ryan SMYTH

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Written by: Jodi 

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Where to donate for Buck 4 Luck

B4LLooking to sign your name to a shamrock? Here is the list of where you can give a Buck 4 Luck and help make muscles move!

Make sure to share a photo of your shamrock with us on social media by using the hashtag #Buck4Luck!

British Columbia

  • Nanaimo Fire Department
  • Tumbler Ridge Fire Department (March 9-13 at the Fire Hall [325 Iles Way] 8 am-4 pm and Shop Easy on March 14)
  • MDC South Okanagan Chapter (March 1 -17 at Anavets Penticton, Summerland Credit Union, Peacock’s Perch Pub in Summerland, Penticton Raquetball Club, Fraternal Order of Eagles Penticton, Elks Lodge Penticton, Kelly O’Bryan’s Restaurant Kelowna, Barley Mill Pub Penticton, Clancy’s Pub Penticton, Kettle Valley Station Pub Penticton)
  • Gillnetter Pub, Port Coquitlam
  • Royal Canadian Legion Branch #122, Golden

Alberta

  • Banff Springs Hotel, Banff
  • Athabasca Valley Inn & Suites, Hinton
  • Beer Revolution, Calgary
  • Beer Revolution, Edmonton
  • Bottlescrew Bill’s Pub, Calgary
  • Brewsters, 11th Ave. Calgary
  • Brewsters, Airdrie
  • Brewsters, Castledowns
  • Brewsters, Century Park
  • Brewsters, Clareview
  • Brewsters, Crowfoot
  • Brewsters, Foothills
  • Brewsters, McKenzie Towne
  • Brewsters, Meadowlark
  • Brewsters, Oliver Square
  • Brewsters Brewhouse, Lake Bonavista
  • Danny Hacksaws Pub N Grub, Edmonton
  • Devaney’s Irish Pub, Edmonton
  • Duggans Boundary, Edmonton
  • Fionn MacCools, Barclay Parade SW
  • Killam Krossing Hotel, Killam
  • Original Joe’s Restaurant & Bar, Red Deer
  • O’Shea’s Eatery & Ale House, Drumheller
  • Our Flames Restaurant & Louge, Olds
  • Royal Canadian Legion Branch #50, Kellwood
  • Shotz Family Sports Lounge, Spruce Grove
  • St. Albert Legion, St. Albert
  • Stony Plain Hotel, Stony Plain
  • The Pub, Edmonton
  • The Rose & Crown Pub, Edmonton
  • The Sherlock Holmes Pub, 112 St. Edmonton
  • The Sherlock Holmes Pub, Downtown Edmonton
  • The Sherlock Holmes Pub, West Edmonton Mall
  • The Toad n Turtle Pub, 27 Ave. NE Calgary
  • The Winkin’ Owl Pub, Bow Botton Tr SE
  • Tilted Kilt, Edmonton
  • Tilted Kilt, Red Deer
  • Tilted Kilt, Sherwood Park
  • Toad n Turtle, Red Deer
  • Toad n Turtle Shepard, Calgary
  • Township 71 Bat & Grill, Grande Prairie
  • Westview Co-op, Olds
  • Toad n Turtle, Airdrie
  • The Hideout, Red Deer
  • Fionn MacCool’s, Edmonton City Centre
  • Vulcan Legion #21, Vulcan
  • Jamesons Pubs, Calgary (17 Ave, Brentwood)
  • The Georgetown Inn, Canmore
  • Transit Hotel, Edmonton
  • Thumpers Bar & Grill, Cold Lake
  • Marina Bowling Centre, Cold Lake
  • Locals Public House, Grande Prairie
  • High River Home Hardware Building Centre, High River
  •  Blarney Stone Pub & Restaurant, Red Deer
  • St. James Corner, Calgary
  • Wok N’ Grill Restaurant & Lounge, Peace River
  • Woody’s Taphouse, Calgary
  • The Toad n Turtle Pub, Calgary (Barlow)
  • Fionn MacCools, Calgary (Barclay Parade SW)
  • Shotz Family Sports Lounge, Spruce Grove
  • Marina Bowling Centre, Cold Lake
  • Thumpers Bar & Grill, Cold Lake

Manitoba

  • McGee’s Family Restaurant, Carman
  • Royal Canadian Legion Branch #73, Flin Flon
  • Royal Canadian Legion Branch #50, Kelwood
  • Smitty Westwood, Winnipeg
  • Burntwood Hotel, Thompson
  • Portage Fire Department, Portage la Praire
  • Dauphin Fire Department, Dauphin

Ontario

  • Kubby’s Draft Bar & Grill – Commissioner’s Road, London
  • Molly Blooms, Stratford
  • Molly and OJ’s Restaurant, Erieau
  •  Kennedy’s Bar & Grill, St Agatha
  • Royal Oak Restaurant – 13 locations, Ottawa
  • Whisper’s Bar & Restaurant, Ottawa
  • Sonney’s Bar & Grill, Ottawa
  • Summerhays Grill, Ottawa
  • The Black Irish Pub, Ottawa
  • Woody’s Urban Pub, Ottawa         
  • Daniel Patricks Pub, Oshawa
  • 3 Steps Up Coffee House, Whitby
  • The Victory Tavern, Timmins
  • Grandview Hotel, Timmins
  • Jakes Bar, Timmins
  • Airport Hotel, South Porcupine
  • The Royal Canadian Legion Branch 287, Timmins
  • Johnny Fresco Restaurant, Waterloo
  • Morty’s Pub, Waterloo
  • Wild Wing, Waterloo
  • Failte Irish Pub, Waterloo
  • Lavigne Tavern, Lavigne                      

New Brunswick 

  • Dooly’s, Quispamsis
  • Walmart, Bathurst
  • Grand Bay Pharmacy, Grand Bay/Westfield

Nova Scotia

  • King Pin Bowling Ltd.,Amherst
  • The Lower Deck,  Halifax
  • The Lower Deck, Clayton Park
  • Amherst Cheverie Pharmasave, Amherst
  • Valley Pharmasave, Middleton
  • Pharmasave, Rockingham Ridge
  • Dartmouth Gate Guardian Drugs, Dartmouth
  • Crossroads Co-op, Parrsboro
  • Weymouth Valufood, Weymouth
  • Garwood Pub at Dalhousie University, Halifax
  • Foodland #9070, St. Peter’s
  • MacDonald’s Convenience Store, St. Andrews
  • R.G. Graves Valufoods, Bridgetown
  • Giant Tiger, Sackville
  • Brewster’s Bar and Grill, Bedford

Prince Edward Island

  • Clows, Hampshire
  • Dooly’s Kent Street, Charlottetown
  • Main Street Pharmasave, Souris

Newfoundland and Labrador 

  • Grenfell Mem Co-Op #176, Grenfell

 

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