Scleroderma Society of Ontario

Scleroderma Society of Ontario 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.

Happy New Year! Wishing everyone a warm and safe celebration at home, with hope for an even better 2021. From all of us ...
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.

People living with scleroderma are more than patients. They are teachers, parents, business owners. They are part of the...
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

Boehringer Ingelheim documentary ‘Beyond Breathless’ features Queen Latifah, shining a spotlight on ILD, the scleroderma...
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. ...

Would you like to learn more about G.I. involvement, or pain management in scleroderma? Watch presentations from this ye...
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.

Whether you're with your family or celebrating apart, the team here at the Scleroderma Society of Ontario wish you all a...
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.

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 c...
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

"The biggest way you can practice self-care during the holidays is to listen to your body." When you are chronically ill...
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

Get toasty this winter with a cozy Kate Spade blanket from the Scleroderma Society of Ontario. Snuggle up with a good bo...
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

Check out these SSO customized natural stone coasters, handcrafted on marble and travertine stone by Creative Custom Coa...
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.

Thank you to everyone who joined our program on Giving Tuesday! Some joined to honour a family member, others for a frie...
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

This holiday season we invite you to join thousands of patients, caregivers and physicians by making a donation to becom...
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

The scleroderma community is like one big family. We are here for scleroderma patients, their families and caregivers, a...
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

DYK? This is #GerdAwarenessWeek. GERD is a common symptom of scleroderma. When the muscles of the lower esophageal sphin...
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.

A very successful week advocating to government on behalf of scleroderma patients, raising awareness and working to have...
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

This week we are meeting virtually with MPPs in our quest to raise awareness of, and seek improved treatments for, scler...
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/

How far have we come? Before 1992, the prognosis for PAH was worse than the worst cancers, like lung cancer. Treatments ...
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

Approximately 90% of scleroderma patients will develop some degree of pulmonary involvement. When fibrosis starts, it ca...
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

Thank you to the Hamilton Scleroderma Group for speaking at last week's Educational Forum. Dr. Mark Larché discussed pro...
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

Exciting news for Ontario. The province has gained a third stem cell treatment centre at Hamilton Health Sciences Juravi...
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

Thank you to the Hamilton Scleroderma Group for speaking at last night's virtual Educational Forum. Dr. Nathan Hambly di...
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.

Big thank you to our fellow Canadian Howie Mandel and so many others for their involvement in raising $1.1 million for s...
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 ...

Carleton Place and Ottawa area friends! Only one more sleep till y'all get served at the Spooktacular Drive 'n Drag - pr...
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.

Our friends Scleroderma Research Foundation always put on a phenomenal scleroderma fundraiser with world-class comedians...
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.

Thank you to last week's conference attendees who answered our daily questionnaires. Your responses will help us with fu...
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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41 King William Street, Suite 206
Hamilton, ON
L8R 1A2

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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