The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.
The Scleroderma Society of Ontario was founded in late 1985 with the help of The Arthritis Society and dedicated volunteers. With the first executive in place, the challenge began and an open information meeting was held on April 20, 1986 in Toronto. Now based out of Hamilton, Ontario the organization functions daily with a limited but dedicated number of staff and widespread group of volunteers.
Big thank you to our #scwalks2020 Top Fundraising teams this week ⤵️
1. Bea K. Warriors
2. The Autoimmune Slayers
3. Hard Word Walkers
Keep it up! If you haven't yet registered for the 2020 scleroderma walks, please visit http://sclerodermawalkrun.ca
LAST CHANCE - enrolment in the SPIN-COVID-19 study will close tonight (April 26, 2020) at midnight EST. Your answers will help researchers better understand the impact of the COVID-19 outbreak on mental health in people living with scleroderma. You may also be eligible to try out the new SPIN-CHAT program.
Follow this link to learn more: https://survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz
Scleroderma Society of Ontario's cover photo
Did you miss or want to re-watch the webinar Staying Well During Covid-19 featuring Dr. Tracy Frech, MD, MS. This webinar, presented by Scleroderma Research Foundation, Scleroderma Foundation, and Scleroderma Canada can now be watched at: https://youtu.be/8Qrn9yzfRnw
SPIN invites you to participate in their most recent research endeavour! Whether you are a SPIN Cohort participant or not, you are invited to take part in the SPIN-COVID-19 Study. Your answers will help researchers better understand the impact of the COVID-19 outbreak on mental health in people living with scleroderma. You may also be eligible to try out the new SPIN-CHAT program! Simply follow this link to find out more: https://survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz
Three SPIN-COVID-19 participants who complete all scheduled questionnaires will be randomly selected to win a free trip to a scleroderma patient congress in 2021 (flight, hotel, and conference registration!)
"While we're all on the lookout for symptoms that could tell us we have this dreaded infection, those who are immunocompromised may or may not have typical symptoms." Dr. Aviva Romm on Covid-19 and autoimmune conditions.
One of the most scary aspects of COVID-19 is the many unknowns.
How to maintain or improve hand and face mobility at home - a Webinar presented by The Scleroderma Research Foundation, The Scleroderma Foundation and Scleroderma Canada. Thursday, April 16, 3pm EST.
Interested in learning how you can improve hand and face mobility at home? Register now for our next webinar talking place Thursday, April 16 at 12:00pm PST (3:00pm EST) and featuring Dr. Janet Poole, Professor of Occupational Therapy and Department Chief of Pediatrics at the University of New Mexico. Collaboratively sponsored by Scleroderma Research Foundation, Scleroderma Foundation and Scleroderma Canada. Register at https://bit.ly/Webinar4-16-20
If you can’t attend, we are recording the webinar and will post it on our website for viewing afterward.
*ATTENTION: Limited Time to Enrol in SPIN’s COVID-19 Project!*
Thank-you to the almost 200 participants who have completed the first SPIN-COVID-19 survey! Eligible participants for the SPIN-CHAT support program will be hearing from the team soon. For those who still haven't signed up, please take the time to complete the SPIN-COVID-19 questionnaire and contribute to the wellbeing of the worldwide scleroderma community: https://survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz
Remember, 3 participants who complete all assessments will win a 2021 trip to a national or international patient congress!
Is COVID-19 affecting your daily life or access to healthcare?
Help Canadian Organization for Rare Disorders better understand how COVID-19 is affecting you and the rare disease community in Canada by answering a short survey. Access additional important surveys, webinars, and COVID-19 information on the Resource page on our website.
Survey 👉 surveymonkey.com/r/CORD_COVID
Resource page 👉 https://www.sclerodermaontario.ca/covid-19
No matter the physical distances between you and your loved ones today, we wish you a happy Easter.
It's here! The SPIN-COVID-19 research study and its SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program was officially launched! See our infographic below for more details and click here to participate: https://survey.co1.qualtrics.com/jfe/form/SV_9pEX6I6Lo6t0fBz
Eligible participants will be able to enroll in the SPIN-CHAT Program immediately or in 4-6 weeks as part of a waitlist.
Qualtrics sophisticated online survey software solutions make creating online surveys easy. Learn more about Research Suite and get a free account today.
The Scleroderma Society of Ontario proudly supports the SPIN group and the work they do to support scleroderma patients.
"Thanks to funding support from partners around the world and to our wonderful team of researchers, professional educators, and the SPIN-COVID-19 Patient Advisory, SPIN will be able to help the scleroderma community stay connected, stay active and maintain their mental health through our brand new videoconference-based SPIN-CHAT (COVID-19 Home-isolation Activities Together) Program! We are incredibly grateful to our international funding partners: the McGill Interdisciplinary Initiative in Infection and Immunity Emergency COVID-19 Research Fund; Scleroderma Canada, made possible by an educational grant for patient support programming from Boehringer Ingelheim; the Scleroderma Society of Ontario; Scleroderma Manitoba; Scleroderma Atlantic; Scleroderma Australia; Scleroderma New South Wales; Scleroderma Victoria; Scleroderma Queensland; and the Scleroderma Association of British Columbia.
Stay tuned! Program details will be released tomorrow when SPIN launches the SPIN-COVID-19 research study, which includes the SPIN-CHAT Program. Eligible participants will be able to enrol in the SPIN-CHAT Program immediately or in 4-6 weeks as part of a waitlist."
The Scleroderma Society of Ontario has created a COVID-19 Resource page as a central source of information, recommendations and videos. Please check the page regularly for updates, as we are continuously adding to it. www.sclerodermaontario.ca/covid-19
To avoid hoarding and shortages, pharmacies have begun filling prescriptions monthly, instead of once every three months; but they're still charging the same dispensing fees per prescription which has patients paying triple for their medications. Has this happened to you?
Pharmacies across the country are now filling prescriptions monthly instead of once every three months, leaving some patients to pay three times the usual amount in dispensing fees.
Dr. Donald Sheppard, Chair of the Dept of Microbiology and Immunology at McGill University, recommends that if a spouse tests positive to Covid-19, it's time sleep in separate rooms. See more recommendations in Scleroderma and COVID 19: A Conversation with the Experts. https://www.youtube.com/watch?v=MT9RJ3-BqTs
Scleroderma Society of Ontario's cover photo
We are very concerned for the health and well-being of our scleroderma family and have updated the statement on Covid-19 on our website. Please visit www.sclerodermaontario.ca to read it - and remember to check back for updates.
UPDATE: Capacity for this Webinar has been reached. A link will be available for those who wish to watch afterward.
Learn how to Stay Well During Covid-19 by attending a webinar this Friday, March 27 at 12:00pm PST presented by The Scleroderma Research Foundation, The Scleroderma Foundation, and Scleroderma Canada and featuring Dr. Tracy Frech, MD, MS. University of Utah, Director of the Systemic Sclerosis Clinic. Register here https://bit.ly/ScleroWebinar32720
Hamilton researchers including those at McMaster Faculty of Health Sciences have designed a study in a record 3 days to test whether combination azithromycin plus chloroquine or hydroxychloroquine can be used to treat COVID-19. While a treatment is imperative and we want a positive outcome, we encourage Healthy Canadians to protect our supply of these medications. Shortages of these drugs will harm scleroderma and lupus patients. As trialing begins Canada needs to ensure autoimmune disease patients do not have interruption to their medication.
Hamilton researchers racing against the clock as projections show health-care system could be strained within four to five weeks
Missed the VideoForum? Watch the recorded session, presented along with Scleroderma Research Foundation, Scleroderma Foundation, SPIN - The Scleroderma Patient-centered Intervention Network and Scleroderma Canada at https://www.youtube.com/watch?v=MT9RJ3-BqTs
If your question wasn't specifically addressed in the discussion and you'd still like to ask, email your scleroderma and Covid-19 questions to [email protected]
"Millions of them are living with a compromised immune system." With #Covid19 precautions around the world, healthy people are beginning to understand what immunosuppressed people deal with. Via CNN Health https://www.cnn.com/2020/03/19/health/immunosuppressed-coronavirus-wellness-trnd/index.html
While there's concern for the elderly catching coronavirus, there's another high-risk group that has nothing to do with age.
The Scleroderma Society of Ontario endorses the Scleroderma Foundation on COVID-19 for people with scleroderma. Please read the statement by visiting https://www.scleroderma.org/site/SPageServer?pagename=patients_COVID19_MSAB&AddInterest=1281#.XnOu1nJ7kdW
Do you have Covid-19 questions? Tune in March 21st to the Covid-19 VideoForum where scleroderma experts including London, Ontario's own Dr. Janet Pope host a VideoForum discussion to answer your questions on #Covid19 & Scleroderma. Sat. March 21 at 11am EDT. Visit www.gotomeet.me/SPIN-SSLED (access code 575-114-197) or phone-in (Canada) 1-888-455-1389. Please note there is a strict limit of 251 participants. For those who cannot gain access, a link will be provided in order to watch afterward.
The Scleroderma Society of Ontario understands the concerns surrounding coronavirus (COVID-19) across our communities and we are thinking of those who’ve been impacted. First and foremost, the health and well-being of our patients, caregivers and all of our members, remain our highest priority. In light of this, all current scheduled events are temporarily on hold. We are continuing to monitor this developing situation and will be offering regular updates regarding these events.
Don't forget, you can still register online for a chance to WIN your 2020 National Scleroderma Conference registration. Winner will be drawn 12 noon EST Monday, March 16th. Register at www.sclerodermaconference.ca
The health and well-being of our patients, caregivers and all of our members remain our highest priority. COVID19 is spread primarily through contact and droplet transmission. Here are steps you can take right now to stay healthy:
- Routine cleaning and sanitation with detergents can reduce the presence of droplets on surfaces and helps prevent the virus from spreading.
- Wash your hands regularly
- Avoid touching your face
- Stay home if you're sick
- Avoid crowds
- Avoid shaking hands or hugging
- Cover coughs & sneezes (not with hands)
If you show no evidence of fever or serious infection, continue taking medications for rheumatic diseases. If patients show symptoms of high fever or a serious infection, seek medical attention. Be sure to mention you are immune suppressed, and consider holding your biologics / disease modifying drugs. If you are on prednisone, do not suddenly stop taking it. For those who have not yet received a flu shot, please do as influenza is still a risk.
Team of researchers from Sunnybrook Health Sciences Centre, McMaster University and University of Toronto has isolated the coronavirus responsible for COVID-19:
A team of researchers from Sunnybrook, McMaster University and the University of Toronto has isolated severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the agent responsible for the ongoing outbreak of COVID-19.
We're excited to have Dr. Ahmad, a Rheumatologist and Clinician Teacher at University of Toronto, speak at the 2020 National Scleroderma Conference. Dr. Ahmad is the education lead for the Toronto Scleroderma Program at Sinai Health.
Register today! www.SclerodermaConference.ca
Leading Canadian government relations and communications firm Temple Scott will address the compelling topic of advocacy and approaching governments successfully at the 2020 National Scleroderma Conference. Register for the conference today at discounted Early Bird prices! Visit www.sclerodermaconference.ca
Thank you to everyone who has joined our team or donated to support us! The Around the Bay Road Race 2020 is less than 4 weeks away and we're training hard and getting excited! Help us spread the word so that we can put our full support behind Dr. Maggie Larché and the team at St. Joseph's Healthcare and Foundation
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