12/31/2020
Happy New Year! Wishing everyone a warm and safe celebration at home, with hope for an even better 2021. From all of us at the Scleroderma Society of Ontario.
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The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.
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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.
12/30/2020
People living with scleroderma are more than patients. They are teachers, parents, business owners. They are part of the community. They are loved. But they are also isolated and coronavirus has made life harder. You can help by becoming a Giving Member. Learn more at https://www.sclerodermaontario.ca/join-today
12/29/2020
Queen Latifah, Bernie Williams Join in ILD Film ‘Beyond Breathless’
Boehringer Ingelheim documentary ‘Beyond Breathless’ features Queen Latifah, shining a spotlight on ILD, the scleroderma complication that took her mother's life.
The new documentary “Beyond Breathless,” spotlighting interstitial lung disease (ILD) patients and their families, will feature actress and producer Queen Latifah and former NY Yankee Bernie Williams. “Beyond Breathless” premieres on the A&E television network on Saturday, Dec. 5 at 12 p.m. ...
12/28/2020
Would you like to learn more about G.I. involvement, or pain management in scleroderma? Watch presentations from this year's National Scleroderma Conference by visiting our website. Visit www.sclerodermaontario.ca and click "Click here to Watch" to see our library of informative videos.
12/24/2020
Whether you're with your family or celebrating apart, the team here at the Scleroderma Society of Ontario wish you all a safe and happy holiday.
12/23/2020
I Ain't Momma Today
Scleroderma warrior Silvia P first wrote I Ain't Momma as a poem, and was inspired to turn it into a song by her vocal coach. Moms fighting scleroderma will understand the sentiment of this incredible song-- the constant struggle to find time for yourself, and this is especially true during the holidays. As Silvia puts it "TURN IT UP! Take a few minutes for yourself today and every day because you deserve it!" https://www.youtube.com/watch?v=qFiMNQ5A33o
Songwriters: Silvia Petrozza, Laura Cavacece Song and video Production by: Cleveland Sound Lab
12/22/2020
Holiday Self-Care Tips When You (or Someone You Love) Have a Chronic Illness
"The biggest way you can practice self-care during the holidays is to listen to your body." When you are chronically ill the holidays can be stressful instead of jolly. But McKenzie Schwark has some great tips here in - Holiday Self-Care Tips When You (or Someone You Love) Have a Chronic Illness
The holidays are fast approaching, and with them comes cheer and relaxation. But when you’re chronically ill, the holidays can take on an entirely different meaning. Additional stress, dietary changes, weather changes and being away from home and out of a normal routine can all exacerbate or trigg...
12/19/2020
Watch 2020 National Conference Videos
This year the Scleroderma Society of Ontario hosted the National Scleroderma Conference with a lineup of international speakers, respected in their fields of expertise. Follow the link below to watch any of the presentations, from dentist visits to digital ulcers to research. www.sclerodermaontario.ca
12/18/2020
I have an autoimmune disease. Should I take the COVID-19 vaccine?
"I have an autoimmune disease. Should I take the COVID-19 vaccine?"
https://www.theglobeandmail.com/life/health-and-fitness/article-i-have-an-autoimmune-disease-should-i-take-the-covid-19-vaccine/
I am worried I will get infected anyway, or even worse, the vaccine will give me the disease
12/14/2020
The holidays may be different this year but one thing that has not changed is our commitment to finding a cure, and a better quality of life for Ontarians with scleroderma. Become a Giving Member of the SSO and help us reach our goal.
https://www.sclerodermaontario.ca/event-details/this-holiday-season-become-a-giving-member
12/10/2020
Get toasty this winter with a cozy Kate Spade blanket from the Scleroderma Society of Ontario. Snuggle up with a good book in your pink, charcoal, or neutral cream blanket. You won't find these special blankets anywhere else. Shop online 👉 www.sclerodermaontario.ca/shop
12/06/2020
Check out these SSO customized natural stone coasters, handcrafted on marble and travertine stone by Creative Custom Coasters.
A portion of sales will go directly to the SSO to support research and awareness.
Contact them directly at creativecustomcoaster.com or visit them on Facebook, to place your holiday order.
12/03/2020
Thank you to everyone who joined our program on Giving Tuesday! Some joined to honour a family member, others for a friend. We look forward to having more Giving Members join us in December and beyond.
We hope you will consider supporting Ontario's incredible scleroderma community by becoming a Giving Member. Please visit https://www.sclerodermaontario.ca/.../this-holiday-season...
#ThankYouThursday
12/01/2020
This holiday season we invite you to join thousands of patients, caregivers and physicians by making a donation to become a Giving Member of the Scleroderma Society of Ontario. Your support lets us continue to reimagine vital resources, deliver education programs, and peer-to-peer support groups, continue to raise critical awareness, and invest in research and finding a cure for Scleroderma. Become a giving member: www.sclerodermaontario.ca/join-today
11/30/2020
The scleroderma community is like one big family. We are here for scleroderma patients, their families and caregivers, and encourage everyone to get involved. Sharing social media posts, or sharing something personal - like your own story - can both have a huge impact. Read some patient stories here: https://www.sclerodermaontario.ca/patient-stories
11/29/2020
We're Fighting For a Brighter Future
Help us continue our work as we push for a brighter future for those living with scleroderma. We've gained allies and much support, and look forward to positive change for patients. Please visit https://www.sclerodermaontario.ca/donate
11/25/2020
DYK? This is #GerdAwarenessWeek. GERD is a common symptom of scleroderma. When the muscles of the lower esophageal sphincter become too weak to close, stomach acid can flow backwards, damaging the esophagus. If you suffer from GERD, raise the head of your bed at least 4 inches to prevent acid from entering the lungs during sleep.
11/20/2020
A very successful week advocating to government on behalf of scleroderma patients, raising awareness and working to have Viagra approved in treatment of Raynaud's, digital ulcers, and vasculitus that does not respond to calcium channel blockers.
#HardWordHarderDisease
#onpoli
11/19/2020
Thank you MPP Kaleed Rasheed, for your Member Statement in the House today, helping our community to raise awareness of scleroderma and the difficulties patients face - even moreso during the pandemic.
#HardWordHarderDisease #onpoli
11/18/2020
This week we are meeting virtually with MPPs in our quest to raise awareness of, and seek improved treatments for, scleroderma. Special thanks to Minister of Health, MPP Christine Elliott, who took the time to speak with us yesterday in an effort to better understand the needs of our community.
Learn more about our work at www.sclerodermaontario.ca/
11/16/2020
What’s it like to be on Methotrexate? 8 of us Sharing our Stories.
What's it like to be on Methotrexate? Eight different women share their experiences:
People with rheumatoid arthritis frequently are put on the prescription medication Methotrexate. Aashi Bhimani of @Spoonieandspoonie on Instagram noticed tha...
11/13/2020
How far have we come? Before 1992, the prognosis for PAH was worse than the worst cancers, like lung cancer. Treatments since then have dramatically improved outcomes for PAH patients. This is why research is so important, and why we bolster our efforts year after year. Visit our website to learn more. www.sclerodermaontario.ca
11/11/2020
The Royal Canadian Legion - National Headquarters
#LestWeForget
(See French below)
Today, we remember the sacrifices that our Veterans made so we can enjoy the freedoms we have today. Wear your Poppy as a pledge to never forget and at 11:00 am please pause to Remember.
They shall grow not old, as we that are left grow old;
Age shall not weary them, nor the years condemn.
At the going down of the sun and in the morning
We will remember them.
We will remember them.
#RemembranceDay #CanadaRemembers #GetYourPoppy
Aujourd'hui,a tradition du Souvenir se poursuit et les Canadiens tombés au combat ne seront pas oubliés. #PortezUnCoquelicot en gage de ne jamais oublier tous ceux qui servent.
Ils ne vieilliront pas comme nous, qui leur avons survécu.
Ils ne connaîtront jamais l'outrage ni le poids des années.
Quand viendra l'heure du crépuscule et celle de l'aurore, nous nous souviendrons d'eux.
Nous nous souviendrons d'eux.
#LeCanadaSeSouvien #JourduSouvenir
11/07/2020
Approximately 90% of scleroderma patients will develop some degree of pulmonary involvement. When fibrosis starts, it causes permanent loss of lung function. Oxygen therapy can help and immunosuppression medications like cyclophosphamide can slow the progression of scarring. The damage cannot be reversed, so prevention is vital. Read about some recent research at our website, www.sclerodermaontario.ca/research
11/03/2020
Thank you to the Hamilton Scleroderma Group for speaking at last week's Educational Forum. Dr. Mark Larché discussed promising research on CXCL4, a protein involved in the immune response. "Higher levels of CXCL4 in patients leads us to believe it contributes to features of scleroderma."
If you missed the forum, you can find a link to the video at www.sclerodermaontario.ca
11/02/2020
‘It’s what we fought for’: Expanded stem cell transplantation unit unveiled at Juravinski Cancer Centre
Exciting news for Ontario. The province has gained a third stem cell treatment centre at Hamilton Health Sciences Juravinksi Hospital in Hamilton, and begins treating patients this month. "The centre is one of three in the province that provides all forms of stem cell transplants to adult patients" https://www.thespec.com/news/hamilton-region/2020/10/30/its-what-we-fought-for-expanded-stem-cell-transplantation-unit-unveiled-at-juravinski-cancer-centre.html?rf
The new unit will start treating patients in November
10/28/2020
Thank you to the Hamilton Scleroderma Group for speaking at last night's virtual Educational Forum. Dr. Nathan Hambly discussed interstitial lung disease, including the 2 most common symptoms: breathlessness and a persistent dry cough. Crackling in the lungs is also evident upon physical examination.
Early diagnosis of ILD is crititcal. Often, by the time symptoms are noticed there is already moderate damage.
10/25/2020
Cool Comedy • Hot Cuisine 2020
Big thank you to our fellow Canadian Howie Mandel and so many others for their involvement in raising $1.1 million for scleroderma research and making Cool Comedy Hot Cuisine such a success. Canada appreciates everything you're all doing for the scleroderma community. Missed it? You can watch the show on Youtube until the end of October. youtube.com/watch?v=v8alCv-fX60
DONATE NOW Donate online: http://srfcure.org Text-to-Give: Text “CURE” to 345345 BID NOW The auction is now open! Go to http://cchc2020.ggo.bid NO RECORDING ...
10/23/2020
Carleton Place and Ottawa area friends! Only one more sleep till y'all get served at the Spooktacular Drive 'n Drag - presented by Xtina Monroe and Babe Kelly. 50/50 proceeds from this event go to the scleroderma documentary series, "This Is Me Dreaming In Colour". October 24th, 9pm. See poster for details.
10/22/2020
Don't miss our upcoming Virtual Educational Forum October 27 at 6pm. Medical professionals will discuss interstitial lung disease (ILD), research, and dealing with COVID-19, with an opportunity for Q&A afterward. Register for this free event and join in from the comfort of your home: https://www.sclerodermaontario.ca/event-details/hamilton-scleroderma-group-patient-education-night
10/18/2020
There's still time to get a virtual ticket to tonight's (Oct 18th, 8pm EDT) Cool Comedy Hot Cuisine scleroderma fundraiser with Bob Saget, or bid on one of these priceless auction items! Get your private link to the Scleroderma Research Foundation's show at: https://srfcure.org/events/cool-comedy-hot-cuisine/
or place a bid here: https://cchc2020.ggo.bid/bidding/package-browse
10/16/2020
Our friends Scleroderma Research Foundation always put on a phenomenal scleroderma fundraiser with world-class comedians & performers. Hosted virtually by Bob Saget & Susan Feniger, this Oct 18th will be no different! Get your virtual tickets to this special online edition of Cool Comedy Hot Cuisine and get ready to have your socks knocked off.
https://srfcure.org/events/cool-comedy-hot-cuisine/
10/15/2020
Inspired By RuPaul's Drag Race
Inspired by RuPaul's Drag Race and the late Chi Chi DeVayne, our friend Silvia (www.instagram.com/theautoimmuneslayer/) will be featured in an upcoming documentary series, "This Is Me Dreaming In Colour", finding her inner drag while living with scleroderma. We will update you as we learn more details about this doc series.
10/13/2020
Thank you to last week's conference attendees who answered our daily questionnaires. Your responses will help us with future events.
10/11/2020
Highlights from Friday's sessions at the National Scleroderma Conference:
Dr. Maril practiced pain management techniques including breathing exercises, with attendees. Dr. Pope discussed gastrointestinal involvement and drugs that can alleviate some symptoms and increase motility. And keynote speaker Betsy Craig concluded the virtual conference with a powerful presentation on her own personal scleroderma story and the 10 principals she follows.
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Watch 2020 National Conference Videos
We're Fighting For a Brighter Future
Inspired By RuPaul's Drag Race
Welcome to the Scleroderma Conference
Christine Elliott Welcomes Guests to Conference
Register for the Conference Today!
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
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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