09/18/2020
New scleroderma merch available on our website! Have it delivered right to your door. Click the SHOP tab to see current items and check back in the future to see new items as we add them. www.sclerodermaontario.ca/shop
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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.
Mission: The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.
09/17/2020
Congratulations to all our registration winners! Thank you for signing up for the 2020 National Scleroderma Conference.
MASK Winners:
Louise G., Saskatchewan
Jeannie T., Ontario
Evelyn C., Alberta
Kelly D., Ontario
BLANKET winners:
Anita W., Ontario
Carolyn N., Alberta
Jillian T., Newfoundland and Labrador
Lisa N., Ontario
09/14/2020
Help us find a cure for Scleroderma
The rain ended just as the 12th Annual Hamilton Scleroderma Charity Golf Tournament began, and it was a perfect day! Thanks to everyone who participated, to our amazing volunteers, and our sponsors - everyone made an impact on helping raise money for research, new treatments, and patient care.
09/11/2020
National Scleroderma Conference Q&As
Do you have questions about your scleroderma? Register for the National Scleroderma Conference and join in! 5 days of expert discussions followed by Q&A sessions. Early Bird pricing ends September 15th! www.sclerodermaconference.ca
09/08/2020
Scleroderma Warrior Betsy Craig, the Award-Winning Leader, CEO, and owner/operator of MenuTrinfo LLC will fill you with courage in her keynote speech. Don't miss out on her honest and inspiring stories at the 2020 National Scleroderma Conference. Reserve your spot and join in from the comfort of your home. www.sclerodermaconference.ca
09/07/2020
Learn about interstitial lung disease in Dr. Shapera's session at the National Scleroderma Conference. Dr. Shapera, University of Toronto alum and Director of the Interstitial Lung Diseases Program at the Toronto General Hospital, has received numerous teaching awards and the Dr. Cameron C. Gray Award. He provides pre-lung transplant assessments for patients with ILDs. Don't miss this 5-day Virtual event. Register at www.sclerodermaconference.ca
09/04/2020
As Founder & Director of SPIN - The Scleroderma Patient-centered Intervention Network, McGill University Professor Dr. Thombs and his team have developed online programs to improve quality of life for people with scleroderma. We're excited to have Dr. Thombs deliver a Keynote speech at the 2020 National Scleroderma Conference. Don't miss this 5-day Virtual event. Register at www.sclerodermaconference.ca
09/02/2020
If you’re a person with scleroderma and you experience related GI symptoms such as bloating, cramping, nausea, vomiting, regurgitation, diarrhea, constipation etc., you may be interested in participating in this research study conducted by The New Orleans Scleroderma Patient Care and Research Center.
Please email your name and phone number to [email protected] to be contacted.
09/01/2020
Home - Hope Breathes Here - Canadian Pulmonary Fibrosis Foundation
One of the complications of scleroderma is Pulmonary Fibrosis, or scraring of the lungs. See how the Canadian Pulmonary Fibrosis Foundation is raising awareness during September - Pulmonary Fibrosis Awareness Month. Visit www.hopebreatheshere.com
Hope Breathes Here events will raise awareness, hope and funds for pulmonary fibrosis through Canada-wide virtual events that are fun and safe.
08/31/2020
Golf for a great cause! Less than two weeks left to sign up your twosome or foursome for the 12th Annual Hamilton Scleroderma Charity Golf Tournament. Deadline Sept 10th. Read more about it here: https://www.sclerodermaontario.ca/event-details/hamilton-scleroderma-charity-golf-tournament
08/26/2020
The 2020 Virtual National Scleroderma Conference will feature guest speaker Dr. Hambly, Clinical Lead of the Firestone Institute Pulmonary Hypertension Program at St. Joseph's Healthcare and Foundation and McMaster University, discussing Pulmonary Arterial Hypertension.
Register today to participate from anywhere in the world: www.sclerodermaconference.ca
08/23/2020
👉 Giveaway! 👈 Register for the National Scleroderma Conference before September 15 (the Early Bird deadline) and you'll be automatically entered to WIN one of 3 cozy Kate Spade blankets! www.sclerodermaconference.ca
08/20/2020
Sign up your foursome for the 12th Annual Hamilton Scleroderma Charity Golf Tournament, a day of golf and raising funds for scleroderma. 10am Sunday, September 13, Flamborough Hills Golf & Country Club. Golf carts and lunch available. Sponsorship opportunities. For more details please email [email protected]
08/18/2020
Queen Latifah Helps Raise Scleroderma Awareness
Thank you Queen Latifah for sharing your story about your mom's scleroderma.
We are looking for scleroderma patients who would be interested in sharing their story for our new website. Please email our office: [email protected]
08/15/2020
DYK? September is Pulmonary Fibrosis Awareness Month. For more information visit: www.hopebreatheshere.com
08/13/2020
Do you have questions about mental health, well-being, and coping in COVID-19? SPIN Director, Dr. Brett Thombs, and the SPIN Team are ready to provide answers. If you have questions, please submit them here: https://survey.co1.qualtrics.com/jfe/form/SV_8iZMxQMx481bTk9
08/10/2020
What is Gastroparesis? FAQ Answered for Gastroparesis Awareness Month 2020
In 2016, the International Foundation for Gastrointestinal Disorders marked August as Gastroparesis Awareness Month. Symptoms include severe nausea, vomiting and cramps. In some cases it can lead to malnutrition.
Read more about this painful complication of scleroderma here.
August is marked as Gastroparesis Awareness Month established by IFFGD in 2016. Throughout August, the International Foundation for Gastrointestinal Disorde
08/06/2020
The numbers are in! See how much you helped us raise during this summer's socially responsible Virtual Scleroderma Walks ⤵️
08/05/2020
We love that Queen Latifah has joined the fight against scleroderma, but sad for the reason why.
"Not a day goes by when I don't think about my mom. I watched her struggle with scleroderma and want to share my story..." In 2018 Queen Latifah's mother passed from SSc-ILD. We're excited she has joined the fight and is using her platform to bring awareness to this little-known disease.
08/04/2020
Do you have questions about mental health, well-being, and coping in COVID-19? SPIN Director Brett Thombs and the SPIN Team are ready to provide answers. If you have questions, please submit them at https://survey.co1.qualtrics.com/jfe/form/SV_8iZMxQMx481bTk9
08/02/2020
The 2020 National Scleroderma Conference has gone from IRL to URL. Limited spots available to experience the conference and its speakers - live. Secure your spot by registering today. www.sclerodermaconference.ca
08/01/2020
Gastroparesis is a painful complication of scleroderma, where the stomach's contents empty too slowly leading to nausea, cramps, vomiting and malnutrition. Eating small, frequent meals helps. August is #GastroparesisAwarenessMonth
07/31/2020
Arm exercises can improve blood circulation, blood vessel dilation in scleroderma patients
Cycling and arm cranking exercises increase circulation and dilate blood vessels, helping to counter the effects of Raynauds and possibly lead to the use of fewer medications.
Performing arm exercises is an effective way to improve blood circulation and blood vessel dilation among scleroderma patients.
07/27/2020
Don't miss Dr. Marie Hudson's keynote address at the 2020 National Scleroderma Conference. Dr. Hudson is a rheumatologist, epidemiologist, Associate Professor and Member of the Division of Experimental Medicine in the Department of Medicine at McGill University. As a founding member of the Canadian Scleroderma Research Group she has established international collaborations with leading scleroderma experts worldwide. Register now at Early Bird pricing, www.sclerodermaconference.ca
07/23/2020
Dr. Maggie Larché is a rheumatologist, faculty of McMaster University and Chair of the Hamilton Scleroderma Group. She will share the latest treatment news at the 2020 National Scleroderma Conference.
Register at http://sclerodermaconference.ca
07/20/2020
We are excited to have London, Ontario's Dr. Janet Pope discuss G.I. involvement in scleroderma at the Virtual 2020 Conference. Dr. Pope's research includes scleroderma, SLE and RA, outcome measurements, clinical trials, and disease manifestations. She has received the Distinguished Investigator Award from the Canadian Rheumatology Association, Rheumatologist of the Year from the Ontario Rheumatology Association, Department of Medicine Research Achievement Award, and the Dean’s Award of Excellence in Research. Register today at www.sclerodermaconference.ca
07/17/2020
Scleroderma Canada
The 2020 Scleroderma Conference is moving ahead with new dates, and a new format. Registration is open now!
Registration is now OPEN for the Virtual 2020 National Scleroderma Conference. Gain insight from researchers, physicians and professional caregivers in 15 sessions, including 3 keynote speakers over 5 days. October 5-9, 2020. www.sclerodermaconference.ca
07/15/2020
Interstitial Lung Disease
Interstitial lung disease (ILD) occurs in about 75% of scleroderma patients. It can range from breathing difficulties to life-threatening complications. This white board presentation on SSc-ILD discusses symptoms, diagnosis, and more. Watch:
07/10/2020
Interested in becoming a patient advocate? The SSO has a few spots available in our virtual advocacy training session where you can learn to advocate effectively to your local government. Please contact John Malcolmson at [email protected] to register.
07/08/2020
Answering your FAQs about Scleroderma: Everything you wanted to know about my life living with Scleroderma
Our friend Georgie in the U.K. has written a new blog answering FAQs about her scleroderma. Scleroderma is different for everyone so our hope is that you'll find her answers comforting or informative. https://www.georgiexoxo.com/2020/06/answering-your-faqs-about-scleroderma-everything-you-wanted-to-know-about-my-life-living-with-scleroderma/
Today I'm answering your FAQs about Scleroderma that some of you have sent me via Twitter and Instagram. Hopefully, this post will give you everything you want
07/05/2020
Thank you so much to our generous supporters this past June. #SclerodermaAwarenessMonth may have ended but our fight hasn't. We're keeping the momentum going as we continue to raise scleroderma awareness. We hope you will too.
07/02/2020
Across the country Scleroderma Canada illuminated structures and landmarks blue on #WorldSclerodermaDay to honour those affected by this disease. We hope this sparked conversation and helped bring to light a terrible disease that needs a greater amount of attention.
www.hardskin.ca
07/01/2020
We would like to thank Hamilton Community Foundation for their generous support of $25,000. Funds received will make a valuable impact toward virtually improving the lives of those living with scleroderma in the Hamilton community.
06/30/2020
Our friend (and one of the good guys!) Andrew Di Rosa has created an exciting movie colouring book with 50% of the proceeds going to Scleroderma Society of Ontario! Those interested can message Andrew on Instagram: @di_rosa or Facebook https://facebook.com/andrew.d.rosa.9
06/29/2020
Today marks 80 years since Swiss-German artist Paul Klee passed away from complications of #scleroderma. The date - June 29 - is recognized as #WorldSclerodermaDay to honour Paul and the thousands of men, women and children living with this terrible disease.
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Videos
Help us find a cure for Scleroderma
The rain ended just as the 12th Annual Hamilton Scleroderma Charity Golf Tournament began, and it was a perfect day! Thanks to everyone who participated, to our amazing volunteers, and our sponsors - everyone made an impact on helping raise money for research, new treatments, and patient care.
National Scleroderma Conference Q&As
Do you have questions about your scleroderma? Register for the National Scleroderma Conference and join in! 5 days of expert discussions followed by Q&A sessions. Early Bird pricing ends September 15th! www.sclerodermaconference.ca
Queen Latifah Helps Raise Scleroderma Awareness
Thank you Queen Latifah for sharing your story about your mom's scleroderma. We are looking for scleroderma patients who would be interested in sharing their story for our new website. Please email our office: [email protected]
Interstitial Lung Disease
Interstitial lung disease (ILD) occurs in about 75% of scleroderma patients. It can range from breathing difficulties to life-threatening complications. This white board presentation on SSc-ILD discusses symptoms, diagnosis, and more. Watch:
Today marks 80 years since Swiss-German artist Paul Klee passed away from complications of #scleroderma. The date - June 29 - is recognized as #WorldSclerodermaDay to honour Paul and the thousands of men, women and children living with this terrible disease.
Walk for Scleroderma, Ottawa!
While we've asked you to Walk Virtually all month, today is the official date of the Ottawa Virtual Walk! Register at www.sclerodermawalkrun.ca, then get out for a stroll around your block, or share your story to help raise awareness of #scleroderma. And to those who have done so already - Thank you!
Walk for Scleroderma, Toronto
We've been asking you to Walk Virtually all month, but today's the official date of the Toronto Virtual Walk! Get out for a walk around your block, or share your story to help raise awareness of scleroderma. www.sclerodermawalkrun.ca
Thank You For Participating in our Scleroderma Walks!
John and Lacey from our office here at the Scleroderma Society of Ontario have an exciting message. Whether you're a patient, family member, caregiver or friend, you'll be overjoyed to hear how much you've helped us raise for scleroderma research. Help us keep the momentum going! There are only a few days left till World Scleroderma Day! Sign up: www.sclerodermawalkrun.ca
Join our Scleroderma Walks!
Scleroderma was the topic of conversation on KX947 when news broke that our Executive Director John completed his 1,000-mile walk for awareness. Have a listen 👂
Walk Virtually for Scleroderma
While we've been encouraging you to Walk Virtually, today's the official date of the Hamilton and London Virtual Walks! Go for a walk around your block, to the park, or share your story. Help us raise awareness so we can improve quality of life for our scleroderma family.
1,000 Miles for Scleroderma
Our Executive Director has just completed 1,000 miles for scleroderma! John's Walk may be done, but ours aren't. We still need your help to reach our goal this June. Sign up for #scwalks2020 to support scleroderma research. Let's find a cure. www.sclerodermawalkrun.ca
MPP Michael Parsa Recognizes Scleroderma Awareness Mth
Today MPP Michael Parsa addressed the House to bring awareness to scleroderma with a reminder that we cannot hold our traditional fundraising Walks this year. We are relying on supporters both new and old to sign up and walk virtually at home by visiting www.sclerodermawalkrun.ca
Walk for Scleroderma This June
"The word is hard to say, but it's even harder watching a loved one go through it." Phyllis is walking for scleroderma this June because we need a cure. Sign up for #scwalks2020 and help us raise awareness and funds for research, to improve quality of life and give hope to scleroderma patients. www.sclerodermawalkrun.ca
New Scleroderma Support Group
An exciting announcement from MPP Jeff Yurek on our new friendship support group, created for London/Elgin/Middlesex scleroderma patients and their families thanks to the generosity of the Ontario Trillium Foundation.
Please Donate to Scleroderma Research This June
Watch MP David Sweet explain the reason he has been a strong supporter of our Walks, an advocate for research and a voice for scleroderma awareness. We'll miss him this year as we all stay safe and Walk or Run virtually, at home. www.sclerodermawalkrun.ca
Walk for Scleroderma!
Our Executive Director John has walked 500 miles (804 kms) for scleroderma and he's not done yet. Join him for the next 500 by participating virtually in #scwalks2020 and help us raise awareness and funds for critical scleroderma research. Register today: www.sclerodermawalkrun.ca
Walk for Scleroderma and You Could Win
Here's your op-paw-tunity to show off your furry bestie and win a $25 Tim Hortons gift card! Sign up for #scwalks2020 to support scleroderma research and send us your best video walking your doggo! www.sclerodermawalkrun.ca Winner announced Monday, May 18.
Take the Global Rheum Alliance Survey
Our friends at the Global Rheumatology Alliance invite patients with rheumatological diseases to complete a survey regarding their experiences with Covid-19. You do not need to have had Covid-19 to participate, but your answers will help the rheumatology community. http://rheum-covid.org/patient-survey
Sign Up Now For The 2020 Scleroderma Walk
Silvia isn't skipping the scleroderma walks this year - our biggest fundraiser has gone virtual and we want to see your creativity! Sign up at www.sclerodermawalkrun.ca and send us photos or video of your walk.
Walk for Scleroderma this May & June
Our 2020 Scleroderma walks have gone VIRTUAL and we need your help more than ever. Watch this message from our Executive Director, John Malcolmson, and sign up to walk at www.sclerodermawalkrun.ca
Register Now for the 2020 Scleroderma Walk
The Scleroderma Society of Ontario is excited to announce the 2020 Scleroderma Walks are going Virtual! Registration is open now. Sign up your team at www.sclerodermawalkrun.ca
Win Your 2020 Scleroderma Conference Pass
Time is running out - one week left to register for a chance to WIN your 2020 National Scleroderma Conference registration. Winner will be drawn March 16th. Register to attend at www.sclerodermaconference.ca
Win a Free Pass to the National Scleroderma Conference
Register for the 2020 National Scleroderma Conference before March 16th for your chance to win one free pass to the event! Register now at Early Bird prices: www.sclerodermaconference.ca
National Scleroderma Conference 2020, Niagara Falls
Scleroderma research never stops. Watch Scleroderma Society of Ontario president Karen Nielsen explain why she attends the conferences. Register today: www.sclerodermaconference.ca
Patient and Caregiver Survey
To better understand the patient community’s online information needs, Boehringer Ingelheim would highly value all patients, caregivers, and patient representatives' input on this global survey. Note: The survey takes approximately 15 minutes to complete, but cannot be saved part-way through. Aggregated results available to all survey respondents. https://hab.instarresearch.com/wix/p614202000.aspx?clink=2
December is usually a time for reflection and we can't stop thinking about the wonderful things that 2019 held for us. A stupendous rooftop fundraiser with acclaimed recording artist Robert Pilon, an enormous turnout for our June Walks (some with special guests!) and the illumination of Niagara Falls in blue. What are some of your favourite memories from 2019?
Support Scleroderma Research This Holiday Season
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones. #HardWordHarderDisease
Support Scleroderma Research This Holiday Season
Your donations are literally changing lives. Thank you for letting us know what's important by continuing to support The Scleroderma Society of Ontario. Enjoy the holidays with your loved ones.
We've had a number of requests for a demonstration or video of exercising with resistance bands, and are happy to share Jenn Cino and Dr. Taylor Thompson illustrating exercises to help patients stay mobile.
Attention Ottawa CFL fans! Heading down to Hamilton to support the REDBLACKS in the Oct 19 game vs. the Ticats? Purchase your tickets through our office and support much-needed scleroderma research at the same time. Call 905-544-0343.
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Comments
Competed the 5km Virtual Toronto Scleroderma walk ( In Barrie , Ontario)
😁🐕❤!!!!Stay safe everyone and happy healthy walking/running!!💙
We just completed the Toronto Scleroderma 5km virtual walk!! ( in Barrie) 50 minutes!! Stay safe everone!!
Hi everyone, I am Kathy Randolph of Yoga for Scleroderma. Do you know anyone in Hong Kong who has Scleroderma? I am teaching a Yoga for Scleroderma teacher training in Hong Kong November 5 - 7, and a key part of the training is working with volunteers who have scleroderma or arthritis. We are reaching out in Hong Kong, but don't have a volunteer with scleroderma yet. I would really appreciate it if you could pass this on to any groups you are in. Thank you!
I have Scleroderma and have written a Book Called THE GIFT WITHIN SOLD AT SMILE AMAZON Part PROCEEDS TO SCLERODERMA RESEARCH
Thankyou and God BLESS
http://www.margiekugler.com/
A few years ago my mom Celine Boisvert was diagnosed with scleroderma. With that she suffered from major fatigue, to the point where all she wanted to do was sleep. She had zero interest in anything anymore (house cleaning, gardening, events, you name it- she had no energy to do it!). Someone who wouldn’t know the disease would think she was in a very deep depression.
About 4 months ago I introduced her to Juice Plus. Within a few weeks she had noticed a few small changes. Less bloating, little more energy. Then about 3 months in she started feeling amazing! Her energy level had changed dramatically! It was literally a night and day difference! She says feel like about ten years younger!!
Celine has since been able to quit 2 of her medications for this auto immune disease, working on a 3rd AND she has been sleeping like a baby!!!
If you feel you are ready and willing to take your health back, let’s talk! Contsct either myself or Celine. She would love to chat about her changes and i would love to share anout getting my mother back! ❤ Why waste any time in life feeling anything less than your best!?
What have you got to lose!?
In Loving Memory of Irene Goodale
Let's help make our Event a successful one if anyone is interested in purchasing tickets to this Event please contact me.
Shannon Goodale