Amazing Race to support boy and those with DMD

While some donors are sometimes skeptical if their charitable dollars are really making an impact, a young Oakville boy with Duchenne Muscular Dystrophy (DMD) is living proof that a local fundraiser is indeed making a difference, close to home.

Dianne Cornish, Flamborough Review- Oct 27, 2011 - http://www.insidehalton.com/

Amazing Race to support boy and those with DMD. RAISING HELP: Pictured is Eric Morden (centre) who is living with Duchenne muscular dystrophy, flanked by his aunt and uncle Ted Lindsay and Heather Johnston. Submitted photo

While some donors are sometimes skeptical if their charitable dollars are really making an impact, a young Oakville boy with Duchenne muscular dystrophy (DMD) is living proof that a local fundraiser is indeed making a difference, close to home.

Eleven-year-old Eric Morden is past the age where most afflicted with the disease are unable to walk and yet, he continues to walk with the help of medications. This year, he was chosen to be part of a major double blind study for boys with DMD.

“The fact that this test is available in London (Ontario) can be directly linked to Jesse’s Journey and even some of the research dollars raised by Eric’s Amazing Race,” said Burlington resident Ted Lindsay, Eric’s uncle and advertising manager at a Metroland newspaper. “To quote Jesse Davidson, ‘people should work together to make research happen because when people work together miracles happen,’” he added.

Lindsay and his wife, Heather Johnston, founded Eric’s Amazing Race, a local car rally and silent auction, after learning of their nephew’s diagnosis with the disorder in November 2002. Rather than accept the news passively, they decided to face it head-on by organizing a fundraiser in support of research into the disorder characterized by muscle degeneration, loss of ambulation and eventually death.

The rally that runs along north Flamborough and Burlington roads when the autumn colours are at their prime seemed like the perfect event to support the cause as research into a cure is indeed a race against time.

The ninth annual Eric’s Race will be held Saturday, Nov. 5, starting about 1 p.m. at Bruce T. Lindley School, 2510 Cavendish Dr. in north Burlington and ending at the Waterdown Legion, where the auction will be held from 3 until 7 p.m.

Registration of race participants will start at the Burlington school at noon. The cost is $10 per person.

Last year’s turnout for the rally was a record, with 40 cars registering, representing a total of 120 participants. Most years, the rally attracts about 30 cars or 100 participants.

Over the past eight years, the event has raised more than $120,000, with all funds going to Jesse’s Journey, a charitable organization that raises funds for research into DMD and gene and stem cell therapies.

The foundation is named after Jesse Davidson, a London man who lost his life to DMD at age 29, just the day before the 2009 race. For more information, visit online at www.jessesjourney.com.

“It’s a very family-friendly event,” Lindsay said of the rally and auction while lauding the support that he and his wife get every year from family and friends.

The auction, which drew close to 500 guests last year, features about 200 items donated by local businesses and individuals, including everything from tickets to Hamilton Bulldog games or the Ontario Science Centre to gift certificates and sports memorabilia. This year, several pieces of equipment autographed by hockey great Mario Lemieux will be up for auction.

Also new this year will be live entertainment by Semitone, a Burlington-based band composed of two acoustic guitar players who will entertain the crowd with classic rock.Lindsay said those who come out to support Eric’s Amazing Race can be assured that their support is having an impact.

“Literally, every dollar makes a difference, ” he said, adding that he’s convinced that research into the disorder has enabled his nephew to remain agile and mobile rather than bound to a wheelchair.

“He’s living it and he’s beating it, and that’s pretty cool,” he said of Eric’s battle with DMD.

According to Rick Moss, managing director of Jesse’s Journey, Eric and other boys are involved in a 52-week double blind study headed up by Dr. Craig Campbell at the Children’s Hospital in London. Eric gets shots there every week to help with muscle regeneration.

Moss said the study will prove helpful for those suffering from other neuromuscular diseases, such as ALS (Amyotrophic Lateral Sclerosis) and MS (Multiple Sclerosis). He added that funds raised at Eric’s Amazing Race have been a great support for research and trials that are helping improve the lives of close to 2,000 boys afflicted with DMD across Canada.

For more information about the fundraiser or to make a donation either to Jesse’s Journey or the auction, please contact Lindsay at 905-331-6874 

or tether69@hotmail.com.

September begins Muscular Dystrophy Canada’s Awareness campaign.

September begins Muscular Dystrophy Canada’s Awareness campaign. Over 50,000 Canadians are affected by a neuromuscular disorder. Some basic facts about Muscular Dystropy.

Muscular Dystrophy Canada is a not-for-profit organization committed to finding a cure for neuromuscular disorders through well funded research. Muscular Dystrophy Canada’s dedicated volunteers and staff across the country raise funds to enhance the lives of those affected by over 150 different kinds of neuromuscular disorders by continually working to provide ongoing support and resources. Muscular Dystrophy Canada’s mission is to enhance the lives of those affected with neuromuscular disorders by continually working to provide ongoing support and resources while relentlessly searching for a cure through well funded research. Today Muscular Dystrophy Canada has 38 chapters and two affiliates in communities across Canada, with thousands of volunteers helping them raise funds so they can provide services to tens of thousands of Canadians affected by neuromuscular disorders.

Muscular Dystrophy Canada delivers a variety of programs within 5 key areas of service: Education; Information; Advocacy; Support; and Equipment. If you or someone you know is affected by muscular dystrophy, they are here to help. Muscular Dystrophy Canada offers a wide range of services and programs. They are committed to improving the lives of people with neuromuscular disorders.

Here’s a few ways Muscular Dystrophy Canada is helping:

Services:

We all know wheelchairs, scooters, orthotics, hospital beds and other essential equipment can cost tens of thousands of dollars annually. Muscular Dystrophy Canada aims to reduce the burden on families by helping to provide funding for new equipment, as well as batteries and repairs. In some situations, they may also be able to provide equipment on loan.

Support:

You are not alone! Muscular Dystrophy Canada staff and volunteers are there to point you in the right direction. Their knowledgeable services staff can provide referrals and contact information to neuromuscular clinics, agencies and other community resources to find solutions to the day-to-day problems you face.

If you are a Canadian and have been diagnosis with a neuromuscular disorder, I encourage you to register with Muscular Dystrophy Canada. Registration is free of charge. And as a registered client, you will have access to all of their services.

Muscular Dystrophy Canada also offers up-to-date information about the different types of neuromuscular disorders and research that is helping to find effective cures and therapies. Since 1954 Muscular Dystrophy Canada has put more than $64 million towards research.

So please help them raise awareness about Muscular Dystrophy during the month of September by visiting Muscular Dystrophy Canada on Facebook, Twitter, and YouTube and please feel free to share a link or two with all your friends.  Please help by making muscles move! 

We Raised $14, 151 for Halton

Congratulations Halton Region Walk for Muscular Dystrophy!

This year's Halton Region Walk for Muscular Dystrophy was met with extraordinary success. Over 90 dedicated participants helped to raise $14,151! That's 108% of our goal!!

The weather was a challenge on event day, but it couldn't stop the community from coming together to have a wonderful event!

Many thanks to the dedicated Halton Region Walk for Muscular Dystrophy Planning Committee and the volunteers who took part in making this event a great success. A special thank you to the Oakville Professional Fire Fighters for their support! See you Next Year 2012!!!

Walking In The Rain for Muscular Dystrophy

The annual Walk for Muscular Dystrophy in Coronation Park Sunday drew hundreds of participants.

Oakville Beaver May 18, 2011 By Michael Ivanin

Walking in the rain

Walt Winge and his daughter Laura de Souza push the wheelchair of Winge's granddaughter and de Souza's niece, Louise Dean.

 

Thank you everyone for a wonderful day.  See you in 2012! We raised over $13,000 for the Region of Halton!!!

Thank you Halton Region Walk for Muscular Dystrophy

Thanks to all of you for the tremendous support for the walkers, volunteers and the community supporters. We braced the cold, wind and rain to raise awareness for Muscular Dystrophy. The rainy weather did not dampen spirits.  Here are a few pictures and more will be posted soon.  Looking forward to seeing you Next Year 2012! We raised more than $13,000!!!

Pictures from 2nd Annual Halton Walk for Muscular Dystrophy Sunday, May 15, 2011 at Coronation Park-Oakville, Ontario

In this photo: Julie Dean, Shanna Bernacki, Jodi Lariviere, Laura Lee, Julia Chernin, John Cussons, Diana D’Agostino  - 2nd Halton Walk for Muscular Dystrophy 2011 Volunteer Committee- Missing from photo is Tyler Ward

 

Walk for Muscular Dystrophy at Coronation

Source from: John Bkila, BURLINGTON POST STAFF - May 13, 2011

For most, dressing, walking up stars or making lunch don't require too much effort. For Halton resident Laura Lee to do those tasks however, she needs help.

In 1997, at age 11, Lee, now 25, was diagnosed with Charcot-Marie-Tooth Disease (CMT), a group of hereditary conditions marked by slowly progressive muscle weakness and atrophy (muscle wasting) in the feet, lower legs, hands and forearms.

Also called Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy, CMT is a disorder under the umbrella of neuromuscular disorders, which includes Muscular Dystrophy (MD).

Walk for Muscular Dystrophy at Coronation. GETTING GOING FOR MUSCULAR DYSTROPHY: Participants are expected to take part in the second annual Walk for Muscular Dystrophy Sunday at Coronation Park. Oakville Beaver file photo

While CMT symptoms may not be highly visible, Lee has  taken her role as Halton Ambassador for Muscular Dystrophy Canada to heart to create as much awareness as possible for the region’s second annual Walk for Muscular Dystrophy, happening this weekend in Oakville, through her network, social media channels and by word of mouth.

“It’s all about that education and awareness for people — that’s still a big barrier we have,” said Lee.

While one in every 2,500 people are affected by CMT, she said, the problem in diagnosing it is that it can look like other diseases, like Muscular Dystrophy, so getting the appropriate tests is very important.

Lee was diagnosed with Type 1A CMT, the disorder’s most common form.

Before being officially diagnosed, however, doctors originally thought she had Chronic Inflammatory Demyelinating Polyneuropathy, a rare nerve swelling disease that can eventually cause the complete loss of sensation in the body.

The symptoms of CMT are generally “nerve damage, muscle loss, (and) problems walking,” Lee says. “Our hands can curl up a bit because there’s not the nerve support to keep them straight anymore… I myself use a wheelchair, which is common, (and) I have leg braces to support whatever walking (ability) I still have.”

While the wheelchair is how Lee manages to get around for the most part, she says from the year she was diagnosed to 2002, no one would have be able to tell that she was suffering from the degenerative disorder.

“It was gradual, but sudden at the same time,” Lee said. “It was about 2002 (when) my disease started to progress. Prior to that if you had looked at me, you wouldn’t have known that I had any condition at all, unless you watched me run or go up stairs… (That year) I went from walking independently to (using) a cane and then a wheelchair in about six months.”

Lee was asked this year by Muscular Dystrophy Canada to be the Halton Ambassador for the walk.

“For me it’s about hope… diseases like mine and MD (they) kind of fall under the radar, but there’s no reason we need to lose hope because of that,” she said. “The type of illness we have isn’t in the forefront in the media or mainstream at all. So by having these events, you look at all the people that come out and they’re saying, ‘We’re here to give you strength. We’re here to give you hope and support, that you’re not alone.’”

Halton will be one of 54 communities participating in the national walk, taking place on Sunday, May 15 at Oakville’s Coronation Park located at 1425 Lakeshore Rd. W. Although this will be the second year Halton participates, it will be the fourth year the event has taken place nationally.

Those interested in participating in the one-kilometre or 5k walks can still register online or in person on the day — there is no registration fee.

Registration begins at 10 a.m., followed by the walk at 11 a.m. Some other activities and prize distribution will take place afterwards, as well.

Last year’s inaugural event saw 100 people in attendance and raised more than $10,000 for Muscular Dystrophy Canada — Lee says she hopes both numbers will be surpassed Sunday.

For more information or to register, visit www.muscle.ca. 

Tyler Ward From The Halton Muscular Dystrophy Committee

Watch Tyler Ward, from the Halton Walk for Muscular Dystrophy Committee, during his interveiw on FYI - (Cogeco Channel 23) as he talk about the upcoming 2nd Annual Halton Walk for Muscular Dystrophy. He invites everyone to come out and join the walk.

Tyler says you can Walk, Roll or Run to raise funds for Muscular Dystrophy.

Donate at Let's make Muscles Move!

Sunday May 15th, 2011 at Coronation Park Oakville

Registration time: 10am

Walk begins at 11am

http://www.muscle.ca/ontario-nunavut/ways-to-give/fundraising-events/walk-for-muscular-dystrophy.html