• Facebook Social Icon
  • Twitter Social Icon

 

September 25, 2017

 

Texte à envoyer aux membres de Myosite Canada

 

Très chers membres de Myosite Canada,

 

Nous sommes ravis de vous informer qu’une entente de collaboration a été conclue entre Myosite Canada et l’entreprise B-Temia Inc. afin d’offrir aux membres de Myosite Canada un accès privilégié à l’appareil motorisé d’assistance à la marche Keeogo™. Il s’agit de l’appareil Dermosquelette™ que notre collègue Martin Jarry a porté pour courir le 10Km à Ottawa le 27 mai dernier. Par le fait même, notre entente avec B-Temia prévoit des activités de co-promotion afin de faire connaître la Myosite et la technologie Dermosquelette™.

 

Fondée en 2010, B-Temia développe et fabrique des technologies biorobotiques pour le marché croissant de l’augmentation de l’humain. Sa technologie brevetée Dermosquelette™ offre à l’utilisateur une mobilité, une force et une autonomie accrues, avec des applications dans les domaines médical, industriel et militaire.

 

L’appareil Keeogo™ a fait ses preuves dans plusieurs essais sur le terrain, études cliniques et évaluations biomécaniques. Ces essais ont entre-autres démontré que l’appareil peut améliorer la capacité de marche, augmenter l’équilibre et la stabilité, réduire les mouvements compensateurs, réduire la douleur, et améliorer la cinétique et la cinématique. Pour les personnes affectées par la myosite, l’appareil Keeogo™ pourrait être utile en compensant la perte de force musculaire dans les jambes.

 

Vous pouvez essayer Keeogo™ et vous le procurer à prix avantageux en passant par Myosite Canada. Nous vous référerons alors à l’entreprise B-Temia qui s’occupera de tout avec vous.

 

Pour plus de détails concernant Keeogo™, visitez le site web : www.keeogo.com

 

 

Dear members of Myositis Canada,

 

We are excited to inform you that Myositis Canada and B-Temia Inc. have signed a collaborative agreement to offer Myositis Canada members privilege access to the Keeogo™ Powered Walking Assistive Device. This is the same Dermoskeleton™ device that our colleague Martin Jarry wore to run the 10K in Ottawa on May 27.  In addition, our agreement with B-Temia provides for co-promotion activities to raise awareness of Myositis and the Dermoskeleton™.

 

Founded in 2010, B-Temia is a developer and manufacturer of biorobotic technology in the growing market of human augmentation. Its proprietary Dermoskeleton™ technology provides improved mobility, strength and autonomy to the user, with applications in the medical, industrial and military fields.

 

The benefits of the Keeogo™ device were proven in several field trials, clinical trials and biomechanical assessments. These trials demonstrated that the device can enhance the ability to walk, increase balance and stability, reduce compensatory movements, reduce pain, and improve kinetics and kinematics. For people affected by Myositis, Keeogo™ could be beneficial by compensating the loss of muscle strength of the legs.

 

You can try Keeogo™ and acquire it at advantageous pricing by going through Myositis Canada. We will then refer you to B-Temia who will take care of everything with you.

 

For more information about Keeogo™, please visit the website: www.keeogo.com

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.

Canadian Rheumatology Conference – Montreal, QC

February 27 - March 2, 2019

Posted January 22, 2019

 

Le français suit l'anglais ci-dessous.

 

Myositis Canada is hosting a booth at the Annual Scientific Meeting of the Canadian Rheumatology Association.  This conference is being held at Farimont The Queen Elizabeth (900 Rene Levesque Boulevard, Montreal) with the theme of ‘Building Bridges’.

 

We need volunteers to sit at our booth to hand out brochures and talk with attendees of the conference.  We did this at the July 2016 International Neurological Conference in Toronto and received very positive feedback from attendees.  Canadian neurologists were particularly pleased to know that our organization was formed with the intent to support myositis people and raise awareness of this disease.  With your help, we can do the same for Canadian rheumatologists.

 

We may be able to reimburse reasonable taxi fare, bus fare or personal mileage costs upon submission of receipts – scanning the receipt & emailing will suffice. 

 

Exhibits/tables are set up on Wednesday, Feb. 27th – we plan to provide a banner for Myositis Canada -- exhibits open at 4 pm.  The booth can be open from Wednesday at 4 pm until Saturday at 1 pm.  How and when the booth will be open depends on volunteer(s) availability.

 

If you are interested in volunteering to man the booth for Myositis Canada, please send an email to mart_jarry@yahoo.ca  with the subject line:  Montreal Conference Volunteer. 

 

Please provide your name, email address, and phone number in the email and which day(s), time(s) you would be available.  We will also need your permission to share this info with other volunteers to ensure that our booth can be manned throughout the conference.

 

Myositis Canada tient un kiosque lors de la réunion scientifique annuelle de l'Association canadienne de rhumatologie. Cette conférence se tiendra à Farimont Le Reine Elizabeth (900, boulevard René-Lévesque, Montréal) sur le thème «Construire des ponts».

Nous avons besoin de volontaires à notre kiosque pour distribuer des brochures et parler aux participants de la conférence. Nous l'avons fait lors de la conférence neurologique internationale de juillet 2016 à Toronto et avons reçu des commentaires très positifs des participants. Les neurologues canadiens ont été particulièrement heureux de savoir que notre organisation avait été créée dans le but de soutenir les personnes atteintes de myosite et de sensibiliser le public à cette maladie. Avec votre aide, nous pouvons faire la même chose pour les rhumatologues canadiens.

Nous pourrons rembourser des frais de taxi raisonnables, des frais de bus ou des frais de kilométrage personnels lors de la soumission des reçus - le scan du reçu et l'envoi par courrier électronique suffiront.

 

Les expositions/tables sont installées le mercredi 27 février - nous prévoyons de fournir une bannière pour Myosite Canada - les expositions seront ouvertes à 16 heures. Le kiosque peut être ouvert du mercredi 27 février à 16h au samedi 2 mars 13h. Le moment et l’ouverture du stand dépendent de la disponibilité des volontaires.

 

Si vous êtes intéressé à faire du bénévolat au stand de Myosite Canada, veuillez envoyer un courriel à mart_jarry@yahoo.ca avec la ligne d'objet: Montreal Conference Volunteer.

Veuillez indiquer votre nom, votre adresse électronique et votre numéro de téléphone dans le courrier électronique, ainsi que le ou les jours et les heures auxquels vous seriez disponible. Nous aurons également besoin de votre permission pour partager cette information avec d’autres bénévoles afin de nous assurer que notre stand pourra être tenu tout au long de la conférence.

 

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!

Canadian Rheumatology Conference – Vancouver, B.C.

February 21-24, 2018

 

Myositis Canada is hosting a booth at the Annual Scientific Meeting of the Canadian Rheumatology Association.  This conference is being held at the JW Marriott parq Vancouver & the Douglas in Vancouver, BC.

 

We need volunteers to sit at our booth to hand out brochures and talk with attendees of the conference.  We did this at the July 2016 International Neurological Conference in Toronto and received very positive feedback from attendees.  Canadian neurologists were particularly pleased to know that our organization was formed with the intent to support myositis people and raise awareness of this disease.  With your help, we can do the same for Canadian rheumatologists.

 

We may be able to reimburse reasonable taxi fare, bus fare or personal mileage costs upon submission of receipts – scanning the receipt & emailing will suffice. 

 

Exhibits/tables are set up on Wednesday, Feb. 21st – we plan to provide a banner for Myositis Canada -  exhibits open at 4 pm.  The booth can be open from Wednesday at 4 pm until Saturday at 1 pm.  How and when the booth will be open depends on volunteer(s) availability.

 

If you are interested in volunteering to man the booth for Myositis Canada, please send an email to Director2@Myositis.ca with the subject line:  Vancouver Conference Volunteer. 

 

Please provide your name, email address and phone number in the email and which day(s), time(s) you would be available.  We will also need your permission to share this info with other volunteers to ensure that our booth can be manned throughout the conference.

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.