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.
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.
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01/29/2020
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

Extending our gratitude to the Caroline Family Health Team in Burlington for their donation of $6,300 in memory of Lois ...
01/27/2020

Extending our gratitude to the Caroline Family Health Team in Burlington for their donation of $6,300 in memory of Lois Kraemer who passed away from complications of scleroderma. Their wonderful donation will continue to fund research and education efforts into the future, making a difference in patients' lives.

The The Around the Bay Road Race is the oldest road race in North America and we are proud to participate this year in s...
01/23/2020
Get Social & Support St. Joe's!

The The Around the Bay Road Race is the oldest road race in North America and we are proud to participate this year in support of the Hamilton Scleroderma Group and St. Joseph's Healthcare and Foundation. Every dollar we raise together supports hope, healing and discovery at St. Joe’s. Please join our team or pledge your support!

Let's form a team for @bayracerun and raise funds to support hope, healing and discovery @stjoeshamilton #bayrace2020. Details Here: http://stjoesfoundation.ca/atb

Some good research from University of Toronto that can potentially be used to benefit patients in the workplace.
01/21/2020

Some good research from University of Toronto that can potentially be used to benefit patients in the workplace.

Recruiting patients primarily from the Toronto Scleroderma Program, researchers from University of Toronto found most had unmet workplace needs including health benefits, special equipment, and flex time.

https://www.healio.com/rheumatology/scleroderma/news/online/%7B85efc890-940c-4135-94b3-d01734b5e7a5%7D/majority-of-employed-patients-with-scleroderma-report-unmet-workplace-needs?utm_medium=social&utm_source=twitter&utm_campaign=sociallinks

The 2020 National Scleroderma Conference this Sept will be the largest in Scleroderma Canada's history and we are excite...
01/20/2020

The 2020 National Scleroderma Conference this Sept will be the largest in Scleroderma Canada's history and we are excited to be hosting. Gain insight and knowledge from researchers and physicians over two full days of programming in Niagara Falls. We are expecting over 250 delegates from Canada, the United States and around the world making this a must-attend, international event. Please stay tuned, registration will be opening soon!

Did you know what Raynauds was before you developed symptoms? “In winter, I’ll wrap up and wear big boots but no matter ...
01/16/2020
Raynaud's Disease Impacts 1 In 5 People – But Many Have Never Heard Of It

Did you know what Raynauds was before you developed symptoms? “In winter, I’ll wrap up and wear big boots but no matter what I do, my toes always go purple.” HuffPost UK speaks to multiple Raynauds sufferers about symptoms, treatments, the underlying diseases that might cause it, and more.

When the cold weather hits, pain and chilblains can be a sign of something more.

For the first time ever, Scleroderma Ontario will be participating in Hamilton's historic Around The Bay race. There's p...
01/14/2020
Get Social & Support St. Joe's!

For the first time ever, Scleroderma Ontario will be participating in Hamilton's historic Around The Bay race. There's plenty of time until race day - March 29, 2020. Join our team or pledge your support!

Let's form a team for @bayracerun and raise funds to support hope, healing and discovery @stjoeshamilton #bayrace2020. Details Here: http://stjoesfoundation.ca/atb

We learn from each others stories - don't be afraid to share your experiences. If you are a newly diagnosed scleroderma ...
01/12/2020

We learn from each others stories - don't be afraid to share your experiences. If you are a newly diagnosed scleroderma patient, talk to us. Visit our website and learn how we can help. https://sclerodermaontario.ca/patient-stories

Has it been easy, or difficult to find proper info on diet & nutrition? Our friends at the SPIN group are looking for sc...
01/11/2020

Has it been easy, or difficult to find proper info on diet & nutrition? Our friends at the SPIN group are looking for scleroderma patients to offer their insights in a focus group. 👇 👇 👇

Visit the SPIN website to see how they're helping the scleroderma community.
01/07/2020
SPIN - The Scleroderma Patient-centered Intervention Network

Visit the SPIN website to see how they're helping the scleroderma community.

Thank-you Scleroderma Society of Ontario (SSO) for funding a 2020 SPIN Research Assistant, helping us connect with and provide support for the #scleroderma community!

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Nous aimerions remercier la Société de sclérodermie de l'Ontario pour la subvention qui nous a été offerte pour l'embauche d'un(e) assistant(e) de recherche SPIN pour l'année 2020. L'ajout d'un(e) membre à notre équipe nous aidera à élargir nos liens avec la communauté et à mieux soutenir les personnes atteintes de sclérodermie !

We are incredibly grateful for your generosity. A donation to the Scleroderma Society of Ontario helps us advocate to go...
01/06/2020
Donate | Scleroderma Society of Ontario

We are incredibly grateful for your generosity. A donation to the Scleroderma Society of Ontario helps us advocate to government for better treatments - like we did in November. It helps our researchers continue to find better treatments, and gives patients hope for the future. Everything helps. Thank you. www.sclerodermaontario.ca/donate

Scleroderma is a rare condition with roughly 3 out of 100,000 people developing the systemic form per year. The estimated rate of incidence in Canada sits at approximately 40,000 individuals.

Don't forget: mark your calendars for Sept 18-19 when the Bi-Annual National Scleroderma Conference lands in beautiful N...
01/05/2020

Don't forget: mark your calendars for Sept 18-19 when the Bi-Annual National Scleroderma Conference lands in beautiful Niagara Falls. Watch for exciting announcements about guest speakers in the coming months.

The new year is nearly here, full of opportunity. Our strategy hasn't changed and we continue to make progress. Our goal...
12/30/2019

The new year is nearly here, full of opportunity. Our strategy hasn't changed and we continue to make progress. Our goal will always be improving the lives of everyone affected by scleroderma.

As a new decade approaches, we look forward with optimism to a future where scleroderma patients have a dramatically improved quality of life. We will continue campaigning for better treatments, investing in the research, and striving for better education and more awareness of this disease. Join us in 2020.

12/27/2019

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?

It takes so much energy, more than just physically, and most people don't really understand that. And to be fair, it's n...
12/23/2019
Scleroderma Canada

It takes so much energy, more than just physically, and most people don't really understand that. And to be fair, it's not really their fault because they've never experienced what you are living.

Patients with chronic illnesses offer tips for dealing with fatigue, pain, parties and more during the holidays. You probably do some of these things already - but we hope you find a new trick or two to help.

If you haven't finished up your holiday shopping yet, the Toronto Eaton Centre and a few other Cadillac Fairview malls o...
12/20/2019

If you haven't finished up your holiday shopping yet, the Toronto Eaton Centre and a few other Cadillac Fairview malls offer this service as well.

With scleroderma, complications like painful digital ulcers and contractures can disrupt daily living and make holiday gift wrapping difficult or impossible. Take advantage of gift wrapping services offered at malls like Toronto's Yorkdale Shopping Centre or Calgary's Core.

12/17/2019
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

12/16/2019
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.

Two weeks ago we engaged our government in a full day of meetings at Queen's Park to champion scleroderma patients and f...
12/12/2019

Two weeks ago we engaged our government in a full day of meetings at Queen's Park to champion scleroderma patients and fight for better access to treatments. We are excited to say, thanks to Temple Scott Associates, it was very successful. Enjoy these photos from the day.

A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.

A full day of meetings with MPPs,  fighting for better access to treatments, and subsidization of expensive medications.
12/12/2019

A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.

A full day of meetings with MPPs, fighting for better access to treatments, and subsidization of expensive medications.

December 11 (tomorrow) 1-3pm, scleroderma patient support group meeting welcomes anyone wishing to talk about the diseas...
12/10/2019

December 11 (tomorrow) 1-3pm, scleroderma patient support group meeting welcomes anyone wishing to talk about the disease in a confidential and supportive environment. Richelieu-Vanier Community Centre, 300 Péres Blancs Ave. Ottawa.

It's a terrible time of year for Raynauds. If you have scleroderma, chances are this was one of the very first symptoms ...
12/06/2019
15 Photos That Show What It Looks Like to Live With Raynaud's Syndrome

It's a terrible time of year for Raynauds. If you have scleroderma, chances are this was one of the very first symptoms you noticed. Here, the Raynauds community shares 15 (painful) photos of how it affects hands, feet and even knees. Feel free to share your own photos, or the ways in which you combat the effects of Raynauds, in the comments.

Do you experience this, too?

Scleroderma Society of Ontario's cover photo
12/06/2019

Scleroderma Society of Ontario's cover photo

Thank you to all our supporters who looked into their hearts and found something to give this week. Your kindness is hel...
12/05/2019

Thank you to all our supporters who looked into their hearts and found something to give this week. Your kindness is helping us fund important research and give hope to scleroderma patients. #ThankYouThursday

We are incredibly grateful for your generosity today. A donation to the Scleroderma Society of Ontario on #GivingTuesday...
12/03/2019

We are incredibly grateful for your generosity today. A donation to the Scleroderma Society of Ontario on #GivingTuesday helps us advocate to government for better treatments, helps our researchers continue to find those treatments, and gives patients hope for the future. Everything helps. Thank you. www.sclerodermaontario.ca/donate

12/01/2019
2019-11-27 Members’ Statements

On November 27 we spent the day at Queen's Park in nearly two dozen meetings, fighting for better access to medications and other key ways to improve the lives of scleroderma patients. We were welcomed during Question Period, and MPPs offered their help and attended our reception afterward. In short, we made an impact. Thank you to everyone who shared their stories and to those who continue to advocate for patients. Watch MPP Donna Skelly's member statement here: https://youtu.be/d_3zFwncFsM?t=875

Taras Natyshak: 0:00 Mike Harris: 1:51 Peggy Sattler: 3:25 Jeremy Roberts: 5:02 Sandy Shaw: 6:30 Mike Schreiner: 8:07 Logan Kanapathi: 9:48 Marit Stiles: 11:...

On November 27 we met with Members of Provincial Parliament, their representatives, and the Premier himself to share per...
11/28/2019

On November 27 we met with Members of Provincial Parliament, their representatives, and the Premier himself to share personal stories and advocate on behalf of patients. With this opportunity we helped decision-makers understand the importance of raising awareness of scleroderma, as well as the compelling need for improved access to and subsidization of unaffordable medications. #HardWordHarderDisease

A study published in the journal Nature Communications has found an antibody able to stop and even reverse disease progr...
11/25/2019
Antibody That Blocks OPG May Become New Treatment for PAH

A study published in the journal Nature Communications has found an antibody able to stop and even reverse disease progression in animal and cell models of PAH. It's a promising find that could stop the progression of PAH.
#PHAwarenessMonth

The Ky3 antibody blocked the activity of PAH-promoting osteoprotegerin, stopping and even reversing disease progression in PAH models, a study reports.

Scleroderma Society of Ontario's cover photo
11/21/2019

Scleroderma Society of Ontario's cover photo

#GivingTuesday is less than 🚨 TWO weeks 🚨 away! Your donation helps fund advocacy and awareness inititatives, and much-n...
11/21/2019

#GivingTuesday is less than 🚨 TWO weeks 🚨 away! Your donation helps fund advocacy and awareness inititatives, and much-needed scleroderma research, giving patients the hope they deserve. Whether it's $50 or $5, everything helps. www.sclerodermaontario.ca/donate

November is Pulmonary Hypertension Awareness Month. It can affect anyone, at any age, including 8-12% of scleroderma pat...
11/18/2019

November is Pulmonary Hypertension Awareness Month. It can affect anyone, at any age, including 8-12% of scleroderma patients. Untreated, average life expectancy of a PH patient is less than 3 years. Read more about this life-threatening complication of scleroderma at http://www.phacanada.ca/

"(The unpredictability of chronic pain) can lead to feelings of terrible guilt, which is why it’s essential that chronic...
11/16/2019
6 Common Misconceptions About People With Chronic Illnesses

"(The unpredictability of chronic pain) can lead to feelings of terrible guilt, which is why it’s essential that chronically ill people treat themselves with self-compassion." First published in Psychology Today, author Toni Bernhard discusses the myths and misconceptions of chronic illness.

4. "If chronically ill people are enjoying themselves, they must feel OK."

If you attended the Apollo Cannabis Clinic educational presentations at Living With Scleroderma in London, Ottawa or Ham...
11/14/2019

If you attended the Apollo Cannabis Clinic educational presentations at Living With Scleroderma in London, Ottawa or Hamilton, or missed the presentation and would like more info, including statistics on medical cannabis, we now have the link on our website 👉 https://sclerodermaontario.ca/patient-forums

11/13/2019
Scleroderma Canada

Help us end scleroderma. #BlueRibbon

There is no cure for scleroderma, a disease that hardens the skin and internal organs. A Blue Ribbon offers hope to families who desperately need a cure. Donate today and help our researchers get one step closer. https://www.scleroderma.ca/donate

11/11/2019

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.

Staying mobile and retaining range of motion is important for scleroderma patients. Certified Personal Trainer Jenn Cino...
11/10/2019

Staying mobile and retaining range of motion is important for scleroderma patients. Certified Personal Trainer Jenn Cino @jenncino discussed exercising with resistance bands at the last Living With Scleroderma forum in Hamilton.
- Bands are very inexpensive.
- Small and portable, allowing for exercise anywhere.
- Excellent for building joint strength and increasing mobility.

Please mark your calendars for this important event. Together with medical professionals, we will discuss the latest res...
11/08/2019

Please mark your calendars for this important event. Together with medical professionals, we will discuss the latest research, share experiences and learn how to better cope with symptoms. Stay tuned for more details.

Scleroderma Society of Ontario 19th Bi-Annual Scleroderma Conference, September 18-19, 2020, Niagara Falls, Ontario
https://www.sclerodermaontario.ca/

Have you been looking for a support group in the Ottawa area? Come on out to the Ottawa Scleroderma Support Group meetin...
11/07/2019

Have you been looking for a support group in the Ottawa area? Come on out to the Ottawa Scleroderma Support Group meeting Wed, Nov. 13, from 1-3pm. Richelieu-Vanier Community Centre, 300 Pères-Blancs Ave. Parking is free.

Mark your calendar for Queen's Park Advocacy Day! On Wed Nov 27 our staff, board and select scleroderma patients will me...
11/04/2019

Mark your calendar for Queen's Park Advocacy Day! On Wed Nov 27 our staff, board and select scleroderma patients will meet with elected officials including Minister of Health, the Hon. Christine Elliott, to promote awareness and request funding for medications and patient education. A cocktail reception with MPPs will take place afterward and we sincerely hope you'll join us. Please register at www.sclerodermaontario.ca/events

Speaking at Living With Scleroderma in Hamilton, Dr. Hambly offered an important advisory; research indicates ILD is exa...
10/31/2019

Speaking at Living With Scleroderma in Hamilton, Dr. Hambly offered an important advisory; research indicates ILD is exacerbated by acid reflux. Lifting the head of your bed (not your pillow or mattress) 4-6 inches is very important for scleroderma patients. Both Drs. Hambly and Larché of the Hamilton Scleroderma Group implore patients to raise the head of their bed.

Registration for Living With Scleroderma forum starts 2pm Oct 29, The Courtyard by Marriott, (1224 Upper James, Hamilton...
10/28/2019

Registration for Living With Scleroderma forum starts 2pm Oct 29, The Courtyard by Marriott, (1224 Upper James, Hamilton) with easy access from the Lincoln M. Alexander Parkway and free parking. Buffet dinner 5pm.

Planning to attend Living With Scleroderma patient forum in Hamilton on Oct 29th? (It's free!) Please register before 3p...
10/24/2019

Planning to attend Living With Scleroderma patient forum in Hamilton on Oct 29th? (It's free!) Please register before 3pm, Friday, Oct 25th so that we can prepare the space to accommodate everyone for this event. You can register online at www.sclerodermaontario.ca/events

Don't miss Living With Scleroderma, a free patient forum presented in partnership with the Hamilton Scleroderma Group. T...
10/22/2019

Don't miss Living With Scleroderma, a free patient forum presented in partnership with the Hamilton Scleroderma Group. This is a free event with speakers from Hamilton's medical community discussing many aspects of the disease including treatment options, common testing patients may require, and new research advances. 2 pm, Tues Oct. 29. Courtyard by Marriott, 1224 Upper James St. Hamilton. Dinner included.
Register online at www.sclerodermaontario.ca/events

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41 King William Street, Suite 206
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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