Archive: September, 2014

Categories

Recent Posts

Tags

Archives

Fashion Follows Form: Designs for Sitting

IMG_4961I took a trip to the Royal Ontario Museum recently, and made sure to go and see the Fashion Follows Form: Designs for Sitting exhibit.

The exhibit was very interesting and informative; as someone who does not use a wheelchair, it was eye opening to the different needs people have from clothing. You may think that the typical forms of clothing would work with maybe a few adjustments to fastenings; most people sit for their jobs, and then sit once they get home as well, we tend to not think of how clothes could be improved for those using sit-down mobility devices.

It is truly amazing to see the forms that the garments created by designer Izzy Camilleri take, and how these changes can greatly improve the function and style of the pieces for those who require the adaptive fashion.

IMG_4970There were two IZAdaptive pieces that I found eye-opening – a pair of pants, and a single-breasted trench like styled coat. Two pieces of clothing that seem simple, but were very much transformed.  It was interesting to see the pieces on display in both a seated position, and standing. This allowed the differences in the cuts and shapes to be shown so you can actually see that even though those pants look like pants that anyone would wear, when they are displayed standing, they look completely different.

I also found a familiar face in the exhibit, Maayan Ziv! She was one of the IMG_4974Exhibition Contributors! I have no doubt that this is a great exhibit to find when you visit the Royal Ontario Museum – make sure to catch it before it leaves on January 25th, 2015.

______________________’

Maria Tassone is the Marketing and Communications Coordinator at the National Office. 

Tags:
Posted on:
No Comments »

The Life You Hadn’t Planned

MD SeptemberI am a big reader and pretty much have loved every book I have ever got my hands on. They force me to see things, become aware of aspects in life that don’t really get noticed. A recent book I came across was “Me Before You,” by Jojo Moyes. In a nutshell, the book is about a woman who takes up a job as a caregiver for a quadriplegic man and falls in love with him. I finished the book in two days. TWO DAYS! If you want to read the book first, I am going to warn you SPOILER ALERT ahead.

(more…)

Tags:
Posted on:
No Comments »

Thank You To Fire Fighters From Our 20th Year

A Commentary of Appreciation to the Fire Fighters of Canada on their Consistent Help for Victims of Muscular Dystrophy

letter-to-ffOn this occasion of the 20th anniversary of the founding of The Muscular Dystrophy Association of Canada, the Board of Directors of that association wish to extend their sincere and warm appreciation to the men of the more than 500 fire fighting departments across Canada who have unstintingly aided in the fight against this dreadful disease.

An estimated 18,000 men actively solicit funds to be spend on research to find a control or a cure for muscular dystrophy, and the be spent on patient services making like easier for the victims of the disease. They do so voluntarily because of their compassion for handicapped children.

“Without the support of the fine men of Canadian fire fighting organizations, our work could not proceed,” says Dudley N. Mendels, president of MDAC. “In the fiscal year ending March 31, 1974, fire fighters raised $831,531. This represents, by far, the largest single source of income for our association.”

During the fiscal year ending next March 31, 1975, The Muscular Dystrophy Association of Canada is hopeful of raising in excess of a million and a half dollars. This sum will be required to meet the research and patient care programs believed necessary. Fire fighter associations across Canada have been made aware of this need and are doing all in their power to help provide the funds. Without that support, it is fully realistic to state that the programs could never come to be.

The kinds of activities engaged in by the fire fighters to raise money are well known to many. However, it is sometimes helpful to others to restate them. These activities include house to house canvassing, participation in community parades with decorated floats, public speaking before church and community associations, toll plazas, raffles, lotteries, interviews with local news media, as well as canvassing of local businesses and industries.

What happens to this money? In Junes of this year, more than $800,000 was committed to support medical research. A total of 42 research projects at 16 universities and hospitals across Canada are now receiving this money. It is the highest amount of money which the association has ever been able to commit.

These new research projects involve dedicated men and women working at the Universities of Alberta, British Columbia, California, Manitoba, Montreal, Ottawa, Saskatchewan, Western Ontario and Wisconsin, as well as Brock, Laval, Memorial of Newfoundland, McGill, McMaster and York Universities.

The disease these dedicated people are fighting is described by doctors as a neurological disorder. More than 20 identifiable types of neurological disorders have been attacked. Muscular dystrophy afflicts its victims in one of three major ways.

Young adults may suffer the facio-scapular variety which causes muscle wasting in the neck and shoulders. Teenage victims usually suffer the limb-girdle variety which causes loss of muscle power in the hips and legs and results in loss of ability to walk.

The third and most prevalent variety of muscular dystrophy is called pseudohypertrophic dystrophy or Duchenne dystrophy. Primarily, young boys are stricken with the disorder which is a gradual wasting of all the muscles of the body. More than half of the 16,000 estimated cases in Canada are of the Duchenne variety. Life expectancy is about 20 years.

Doctors are aware that some forms of the disease are the result of a genetic defect, transmitted to the victim at the time of conception by the mother.

At present, blood testing of a woman can determine if she is a carrier of the defective gene. Unfortunately, this testing is mot part of regular medical procedure, even if she is pregnant. Usually such testing is preformed only in the case where muscular dystrophy is already in the family.

To further complicate the research work, new cases of muscular dystrophy – those where no family history of the disorder exists – occur in about a third of all cases.

Fire Fighters across Canada who are helping the Muscular Dystrophy Association know full well the terrible tragedy that is the result of the discovery that someone has the disease. In many cases, dystrophic children are abandoned to some sort of institution. In other cases, one parent alone, tries to play the role of both mother and father, because some adults cannot accept the living fact of a dystrophic child. They abandon spouse and child. Some parents become alcoholics, and cases of mental breakdown are not uncommon.

In many cases, the dystrophic child develops a personality problem, because of bad parental attitudes and actions.

Education of the dystrophic child too, is an ongoing and time demanding task, both for parents and for educational authorities. The job of transporting dystrophic victims, often performed by volunteer fire fighters in many communities, is a physically demanding activity demanding the patience of Job and the strength of Hercules.

The Muscular Dystrophy Association of Canada can never have enough funds to carry on its fine work. Never, in the sense that until a cure or a control is found, the association will do all in its power to raise more and more money for the dedicated medical research people we need to desperately to turn their attention to this affliction.

This is why, MDAC is so grateful to the men of the fire fighting associations across Canada who have given of themselves so unselfishly in the past 20 years. This is why too, we urge you to give your most vocal and real support to the men who work with you in pursuit of human happiness.

 

Tags:
Posted on:
No Comments »

We Thank Mesachie Lake, B.C.

photo1e On Fathers Day weekend in June, members of eight fire departments and their families gathered together for another memorable weekend of golf, softball, and fundraising.

2014 marked the 35th anniversary of a historical event in the small town of Mesachie Lake on the West Coast of British Columbia.  Mesachie quickly became host to hundreds of fire fighters and their families who join together to support those living with neuromuscular disorders.

This year, the live auction alone at Mesachie raised over $35,000! Now, this is no ordinary auction; a t-shirt goes for $100, and a BBQ can go for over $7000. These fire department members come to spend money and spend they do!

The ball tournament started when the small Mesachie Lake Fire Department needed to raised a few hundred dollars to buy a piece of equipment for their hall. Once they accomplished their goal, they wanted to continue to host the fun weekend, but wanted a charity to support.  With photoetwo local families who had children diagnosed with muscular dystrophy and knowing that Muscular Dystrophy Canada is the charity of choice for Fire Fighters, the decision was a no-brainer.  All of this started the 35 years of support.

The Mesachie Lake Ball Tournament has raised $750,000 for people with neuromuscular disorders, and the fundraising doesn’t stop at the Fighter Fighters.  Even some of the Fire Fighter’s children put up lemonade and water stands this year! Ty and Danica Ferguson, along with their cousin Draysen King donated $40.75 from their own fundraising efforts at Mesachie.

photo2eThe weekend is about tradition, family, and fun!  It’s rather remarkable to watch grandparents selling 50/50 tickets and see their own children working in the kitchen, and then their grandchildren selling water at the event.  Many generations taking part for a cause, our cause.  The mantra for this event is loud and clear “Until There is a Cure-There is Us!”. We thank the Mesachie Group and department members, friends, family, and children for helping “Make Muscles Move!”

Tags:
Posted on:
No Comments »

A Family’s Passion

FergusonKingwebAsk Board treasurer, Dave Ferguson about his long-term commitment to Muscular Dystrophy Canada and he reasons that it must be something in the family DNA.

“I come from a pedigree of volunteers,” he explains. Born and raised in Scotland, his mother, father and other family members were also community-minded.

In 1981, Ferguson joined the local volunteer fire department in Cowichan Bay, B.C. after moving wife, Barb and kids, Cathy and Cam from Prince George. “Muscular Dystrophy Canada did a presentation for Fire Fighters and I kind of got hooked,” he now admits. He became a Fire Fighter advisor for Central Vancouver Island. Of his supportive wife, Barb, Ferguson says, “She’s a caring person. Her name is first on the pledge sheet.”

Suddenly, when the sons of a Duncan Fire Fighter and a Mesachie Lake Fire Fighter were affected by Duchenne muscular dystrophy, Ferguson became even more invested in the cause.

One of those young men, Adam Sohye, is now Godfather to Ferguson’s seven-year-old grandson, Draysen. Says Ferguson:  “It’s special for Barb and I to sit back and watch that relationship develop.”

As her Dad became more involved with Muscular Dystrophy Canada’s clients, Cathy (Draysen’s mum) grew more aware of the neuromuscular disorder and how it affected the clients and their families.  At 13, Cathy planned her first fundraising event at the Fire Hall—a 24-hour danceathon. She raised $1,000. “We were always going to the Fire Hall,” she adds, “We look up to Dad. He’s our inspiration.”

With their Dad, working in the banking industry and as a volunteer Fire Fighter and Mum, a registered nurse, both parents’ activities played a large role in how the Ferguson kids viewed the world. Says Cathy: “Our mum worked in a nursing home. It wasn’t weird for us to be around people who were different. It’s okay to be different.”

These days, Cathy’s married to Mike King. She says he “jumped on the passion train with the rest of the family.” Also a volunteer Fire Fighter, Mike’s equally committed to the family cause.

Cathy received the 2013 regional Mary Ann Wickham Volunteer of the Year award. She works part-time and together, she and Mike are raising Koltin, 16, Kalliana, 13, Draysen, 7 and Maddex, 4.

From age 4, Cathy’s brother, Cam, realized he wanted to follow in his father’s footsteps, too. He became a Fire Fighter and a strong supporter of people with neuromuscular disorders. Says his father: “It warms my heart to see everyone involved with Muscular Dystrophy Canada.” These days he watches as Cathy and Cam make connections with others on the Internet. “Social media allows the ask to spread much more easily,” he explains. “I stepped back to let my son and daughter take the lead.”

In 2012, Cam received Fire Fighter of the Year Award from Muscular Dystrophy Canada.  “I don’t host ball tournaments and Walks by myself. I get huge support from family,” he explains, to remove the focus from himself as so many Fire Fighters (and Fergusons) seem to do.

Cam and his wife, Tricia, have two children, Ty, 8, and Danica, 5. “The kids are out to events, ball tournaments and Walks. Muscular Dystrophy Canada is a big part of our family.”

Although they’re close, Cathy and Cam have always enjoyed a friendly rivalry. Last September, when Fire Fighters planned a 5 km walk in full gear for the first-ever Nanaimo Safeway Walk for Muscular Dystrophy, Cathy told her brother, “ ‘I’ll beat you!’ ” and he countered, “‘if, you think you can!’ ” She raised $4,000 to Cam’s $1,500.

“I didn’t expect her to wear the jacket, pants, boots and air pack. That’s between 60 and 70 pounds,” explains Cam, who is both a volunteer Fire Fighter and a Civilian Class Fire Fighter at Canadian Forces Base Esquimalt. “She marched side by side with us. It was a proud moment.”

When Cathy and Mike’s son, Koltin participated in the 2012 Great Lake Walk, (a 56 km event around Lake Cowichan held on his 14th birthday) he planned to celebrate the day by raising $1,400. According to his mother, “he raised twice that and blew it out of the water.”

Younger sister, Kalliana, considers Koltin a hero. Yet, she’s a hero in her own right. Five years ago, with plans to shave her hair and raise $50, she raised a whopping $14,600. Before shaving her hair, she dyed it neon pink. And Adam, whom she’s known “forever,” dyed his hair pink, too.

In 2012, Kalliana received the Caring Canadian Award from the Governor General of Canada. Kalliana and her mum also flew to Los Angeles to receive Inspiration awards from an organization that celebrates extraordinary women. In 2011, she received the B.C. Community Award from the provincial Lieutenant Governor. In 2010, Muscular Dystrophy Canada honoured Kalliana with the regional Mary Ann Wickham Volunteer of the Year award and the national Courage To Inspire award.

When it comes to being recognized for performing good deeds, Cathy feels a little uncomfortable. “I’m out of my comfort zone,” says the woman who has inspired her kids to collect empty bottles for drives and participate in annual Walks to raise funds for muscular dystrophy. She admits, “That’s not what it’s about for me. I like to be out there for the good of someone else.”

Brother Cam feels the same way. “It was in our upbringing. We’re not out there to be recognized for what we’re doing,” he explains. “We’ve got this passion to help these people. We’re out there because somebody needs to do it.”

_____________________

This story and others can be found in the 2013-2014 Annual Report. To read the report, please click here

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