President’s Report 2021

 

I’m pleased to report that Myositis Canada accomplished a few goals this year.  We’ve increased our membership to over 200 members across Canada. 

 

Your Myositis Canada Board met with Chrissy Thornton, the new Executive Director of the TMA, in March.  We talked about a few joint efforts we’d like to see between our organizations.  As a result of this, Myositis Canada joined a Global Alliance composed of the TMA, Myositis Australia, Myositis Support & Understanding, and Cure JM.  We’ve had two meetings and have committed to jointly working on compiling a list of Gadgets, Aids and Tips, Mental Health collaboration and a possibility of a joint project to raise awareness of myositis with a potential movie being made in the US.  Canada will be leading the committee compiling the list of Gadgets, Aids and Tips. 

 

Many of you have received the face mask that we had made with our Myositis Canada logo.  Just about every time I wore mine someone asked, “What’s myositis?”  Although we weren’t going out that much because of Covid, I hope a few people were informed about our disease.  Any new member registering with us is being sent a face mask and that will continue until we run out.

 

We held a national support group meeting on May 11th in honour of May is Myositis month.  Our two 2019 grant recipients, Dr. Mo Osman and Dr. Oceane Landon-Cardinal spoke about the studies our funds were used for.  We had 20 people attend the virtual meeting and it encouraged your Board to hold a second one on June 27th.  During that meeting we talked about the various aids each of us use in our daily life.  A third meeting was held October 2, but was not well attended.  In the coming year, your Board of Directors will strive to establish regional and/or provincial support groups, likely via Zoom until this pandemic is under control.  A southern Ontario group meeting was held Oct 23rd & was attended by 12 people.  That meeting really emphasized to me that exchanging stories and tips is appreciated by everyone.

 

I am also pleased to announce that we gave a $25,000 grant for an IBM study that is being conducted by Dr. May Choi of the University of Calgary and Dr. Tarnapolsky from McMaster University.

 

For the coming year, Myositis Canada hopes to accomplish the following:

 

Through our Global Alliance we are committed to listing resources, eg. Daily living aids that we hope will assist our members in their myositis journey. 

 

We get numerous emails asking for names of doctors that have specific knowledge of DM, PM and IBM.  We don’t have such a list but are sometimes able to put that person in touch with another myositis patient who advises of doctors they’re aware of.  Myositis Canada can’t make recommendations or referrals, but the Board has decided that we will compile a list of Doctors who specialize in DM, PM or IBM across Canada.

2021 Grant Award

Elaine Dicken, President of Myositis Canada/Myosite Canada is pleased to announce the award of a $25,000 grant to a team of Canadian researchers - Dr. May Choi from the University of Calgary and Dr. Mark Tarnopolsky from McMaster University.  

Their research will focus upon earlier identification of an antibody that indicates sporadic Inclusion Body Myositis (sIBM).

Current diagnosis time is 59 months on average.  In this almost five year period, frequent misdiagnosis occurs often resulting in powerful medications being prescribed.  These meds have no effect on sIBM, prolong the diagnosis time, jeopardize a patient's liver, and incur much unnecessary cost to our already burdened health systems.  Additionally, the mental health challenges of the '5-year journey to diagnosis' are immeasurable, and it delays the necessary exercise regimes that slow the inevitable sIBM immobility.

Herb Malcomson chaired the review committee that included Dr. Sheldon Freelan, and Dr. Shannon Venance, who is a Neurologist & Associate Professor at UWO.  Both have in-depth familiarity with sIBM.

Tax Deductions

One of our members contacted their local taxation centre in Ontario asking if non-prescription expenses could be included on their tax return. The member was informed verbally that the following expenses could be used as tax deductions if a letter was obtained from his doctor prescribing these items:

- working out at a gym

- purchasing a stationary bike for home use

- Creatine

- Whey

- Vitamins D, B12, Calcium, Omega 3, Q10

- Raised toilet seat

- Resistance bands for exercise

- Knee sleeves/braces.

Check with your local taxation office & keep your receipts!

How to design your own half-step cane

Rene from Quebec has sent photos and instructions on how to design your own half-step cane. Check it out here on the Forum tab then click on Myositis Life.

Myositis Canada Supporting Research in Canada

August 5, 2019.

Myositis Canada is proud to be supporting research on myositis in Canada through two research projects.

 

Dr. Océane Landon-Cardinale, Clinician, Centre Hospitalier de l’Université de Montréal (CHUM) and Associate professor, Department of Medicine, Université de Montréal, Canada and Dr. Valérie Leclair, Clinician, Jewish General Hospital (JGH) and Associate professor, Department of Medicine, McGill University are investigating the characteristics of histopathologic features of subjects affected by scleromyositis (SM), a myositis subset that is both challenging to diagnose and treat. They will identify well characterized SM patients from the Canadian Inflammatory Myopathies Study (CIMS) group and describe in detail the features of their muscle biopsies, including systematic electronic microscopy and novel histochemistry. Their primary aim is to identify specific histopathologic features of SM that could facilitate diagnosis and potentially lead to new therapeutic approaches for SM patients. This project will be completed May 1, 2020.

Dr. Mohammed Osman, Assistant Clinical Professor, University of Alberta, and Dr Stephanie Keeling, Associate Professor, University of Alberta.

What is the purpose of our study?

Although other studies have shown that patients with inflammatory diseases like lupus or rheumatoid arthritis have an  increased  risk for  having  metabolic changes  where the  body becomes more resistant to the hormone insulin, our study takes it much further.  First, we aim to show that resistance to insulin is common in patients with newly diagnosed dermatomyositis (DM), particularly in people with very active disease that have not received steroids for more than 2 days.  This has not been shown before in lupus or other connective tissue diseases. To do this, we are incorporating a validated disease activity score that doctors use in clinical trials for myositis, and we are using a machine called a nail fold video capillaroscope (NVC) to correlate the disease activity with the degree of resistance to insulin. NVC allows us to directly visualize microscopic blood vessels in the finger nails of patients with DM, which has recently been shown to mirror the disease activity in DM.  NVC is very new to Canada, and there is only one other center in Canada (besides ours) that routinely performs it.   Second, our study links the development of insulin resistance to mitochondria (the cell's bioreactors). We think this may be because people with DM may carry a variant of a protein called "uncoupling protein 2" (UCP2) where less of it is made resulting in the mitochondria being less active.  People that carry this common (40 %) genetic variant are susceptible to both insulin resistance and other autoimmune diseases (e.g. multiple sclerosis and lupus).  We will test approximately 200 DM patients across Canada for the presence of this genetic variant, along with patients with DM at the University of Utah in the United States.  Third, our study aims to show that biopsies from patients with active DM not only have less functional mitochondria, as a result of decreased activity of the mitochondrial gate-keeping enzyme pyruvate dehydrogenase.   Together, our study will link insulin resistance with cellular abnormalities that may be important in DM patients, which may lead to novel therapeutic strategies in DM.

 

How will our study relate to the Vision and Mission of Myositis Canada?

Our study is a translational study with outcomes that will increase our knowledge of what happens in DM, and how we can treat it better.  We are also incorporating NVC in the care of

patients with NVC which is becoming an accepted part of caring for patients with DM across the

world; and we are training the rheumatology subspecialty residents to perform NVC in the clinic. This will improve the care of patients with myositis as sometimes markers of inflammation or muscle enzymes are not abnonnal in patients with active myositis.  In addition, this study will

also allow us (University of Alberta connective tissue disease clinic) to become a national clinical trial center in DM as we will train our research team to be more comfortable with clinical trial outcomes in DM.   We are also a member of the Canadian Inflammatory Myositis Study group (CIMS) which will benefit patients with myositis across the country.

This project will be concluded July 31, 2020.

 

Report from AGM, January 14th, 2019.

Submitted by Gael James, President, January 21, 2019

The AGM was held via Skype with 2018 board members (Elaine, Roxanna, Chelsie, and new board member Gael) present, along with four other interested myositis citizens. The President's report (Elaine) demonstrated what a very difficult year it was last year as all of the executive were not able to continue in their roles, leaving the remaining board members to figure out how to get everything transferred over to them when no one had signing authority.

 

I'd like to take this moment to thank Elaine, Roxanna and Chelsie for their incredible dedication to MyoCan. Without their efforts MyoCan would have imploded. Thanks for sticking with it, team!!

The Minutes of the last meeting were passed, as was the Financial Report. A call-out for a grant was sent out in mid-January with an application deadline of February 10th. The grant is for $30,000 (or 2 x $15,000, or some other iteration). If you know of a researcher who might be interested in applying for this please contact me and I will pass on the details.

Finally, I was elected President of the Myositis Association of Canada at the AGM. We are still looking for a couple of new board members to take on the role of secretary and VP. Experience is not needed, just a willingness to help out where needed; perhaps 6 hours/month for an executive role, and 3 hours/month for a director. I am putting out feelers to possible board members who might be interested and yet do not have myositis so that hopefully they would not have to step down from their role due to health challenges. I'm thinking rheumotolgists, spouses/partners/other relatives, interns, researchers... If this sounds like something you'd like to do, or if you know of someone who is interested, please email me at president@myositis.ca. Or if you have any comments, questions or suggestions, please don't hesitate to reach out to me!

August 2, 2017

Introduction of MYONEWS!

 

Myositis Canada is pleased to announce MyoNews.  It is our intention that MyoNews will publish newsworthy articles on our website: Myositis Canada.ca.  The Communications Committee composed of Elaine Dicken and Chelsey Dawes will be writing and editing articles and information about myositis and the activities and initiatives of Myositis Canada.

 

If you have suggestions, ideas, or wish to write articles, please feel free to submit them to the Communications Committee (Director2@Myositis.ca) for review.  We do reserve the right to edit submissions for content and applicability. 

 

 

MAY was Myositis Month

 

Throughout the month of May, a number of individuals and groups participated in a variety of events and social media campaigns around the world to raise awareness for Myositis. Three events that created awareness for Myositis Canada are outlined below.