SOURCE: Myositis Canada

Myositis Canada

February 25, 2016 05:00 ET

MYOSITIS CANADA Issues Challenge: #GiveMeMuscle

Launch of Social Media Campaign Coincides With International Rare Disease Day -- February 29

TORONTO, ON--(Marketwired - February 25, 2016) - A non-profit Canadian organization dedicated to helping improve the lives of people affected by a rare but debilitating muscle disease is launching a Canada-wide social media campaign.

Myositis Canada hopes the campaign will not only raise awareness of this rare disease, but draw attention to this newly chartered, truly Canadian organization. The Canada Revenue Agency (CRA) granted Myositis Canada charitable status in December 2015.

Just in time for International Rare Disease Day, Myositis Canada will start posting weekly workout challenges for people around the nation. The goal? To have people take a photo or video of their workouts and post them to their social media platforms with the hashtag #GiveMeMuscle.

"We've launched the #GiveMeMuscle campaign to draw attention to a disease that can strike the very young or old with little warning," says Jay Fedosoff, Fundraising and Communications Chair of Myositis Canada. "We hope that this social media outreach will lead people to our website to get information and connect with others in the myositis community. If they choose, they can donate quickly and easily via PayPal."

Fedosoff was hit with the disease when he was 25 years old. Now 40, he was ultimately diagnosed and has successfully responded to treatment. "I'm one of the lucky ones. But there are hundreds of Canadians still searching for the proper diagnosis or treatment that will relieve their pain."

Myositis Canada is a non-profit, volunteer organization dedicated to improving the lives of people affected by myositis. Formed in 2015, it is governed by a volunteer Board of Directors that includes patients, family members and interested professionals, bringing diverse strengths and perspectives to the organization.

More Quotes:

Herb Malcomson, President, Myositis Canada
403-540-1377, 403-640-4172, herbmalcomson@hotmail.com

"The CRA designation is especially satisfying because it allows us to retain here many of the previous Canadian charitable gifts that were often times sent to our American partners to support research there. Our American friends at The Myositis Association have been good to us, but it is also fair to say that only small amounts of these large contributions found their way back to Canadians."

"The scientific community has just recently seen a significant increase in Myositis research, for two key reasons:

  • A very hard to detect antibody associated with Myositis has just recently been identified, and
  • Many clinical trials nearing completion are showing positive effects.

With an identified 'trigger' and forward progress on Trials, Big Pharma and researchers are jumping on board more than ever to track down therapies and quite possibly a cure for these challenging diseases."

Wanda Bootsma, Secretary, Myositis Canada
780- 720-0280, werboots@telus.net

"While the CRA designation is very positive, I am perhaps most excited by the number of new Myositis patients and families that have been made aware of the existence of a support group in the country and potentially in a community close to them. Knowing that you are 'among friends' when you connect with another Myositis patients or group is an absolutely amazing therapy, that goes far to address the most insidious aspect of these diseases - the mental piece."

Background Information:

Myositis Canada

  • Myositis Canada is a non-profit, volunteer organization dedicated to improving the lives of people affected by myositis.
  • Formed in 2015, Myositis Canada is governed by a volunteer Board of Directors that includes patients, family members and interested professionals, bringing diverse strengths and perspectives to the organization.
  • The organization achieved charitable status from the Canada Revenue Agency (CRA) on December 2, 2015.
  • Myositis Canada web
  • The Myositis Association - US Partner association

What is myositis?

  • The muscle inflammation, and can be caused by infection, injury, certain medicines, exercise, and chronic disease.
  • The word myositis literally means inflammation of muscle; it describes inflammation or swelling of the muscle tissue that can result in rapid and tragic muscle loss;
  • the inflammation can be caused by infection, injury, certain medicines, exercise, and chronic disease;
  • Many doctors across Canada have seen so few cases of myositis that often patients go undiagnosed or misdiagnosed which leads to complications and at times a longer recovery period.
  • Some of the chronic, or persistent, forms are idiopathic inflammatory myopathies, and those are the diseases we discuss here. "Idiopathic" means that the cause is unknown.
  • Some of the chronic, or persistent, forms are idiopathic inflammatory myopathies. There are a number of types of myositis, they include:
    • Dermatomyositis (DM)
    • Inclusion-body myositis (IBM)
    • Juvenile forms of myositis (JM)
    • Polymyositis (PM)
  • There are currently treatments for all forms of myositis except for inclusion-body myositis.
  • The other forms of myositis can be treated but only about 20% of people affected make a full recovery, flare ups are often common over the span of a lifetime.
  • As research continues into the causes, symptoms and effects of this disease, new forms of myositis are brought forward.

Contact Information

  • For more information:
    Jay Fedosoff
    Fundraising and Communications Chair
    Myositis Canada, 416-716-6709
    j.m.fedosoff@gmail.com