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Research Scleroderma Research Scleroderma Society of Ontario is dedicated to supporting continuous research of scleroderma diagnosis and treatment to support patients and caregivers. For over a decade, SSO has been providing funding to physicians and researchers seeking new information for the scleroderma community. Grant Application If you are interested in completing our funding request, click here to download the application form . Submit to john@scleroderma.ca Have questions? Please reach out to us at info@scleroderma.ca Grant Recipients 2021 Scleroderma Society of Ontario: Dr. Jean Luc Senecal – CHUM - $15,000.00 Dr. Maggie Larché - Hamilton Scleroderma Group - $25,000.00 Dr. Mo Osman - University of Alberta - $25,000.00 Canadian Scleroderma Research Group - $25,000.00 Scleroderma Canada: Dr. Nancy Maltez – Ottawa Hospital - $10,000.00 Dr. Mo Osman - University of Alberta - $25,000.00 Canadian Scleroderma Research Group - $25,000.00 Dr. Jean Luc Senecal – CHUM - $10,000.00 Grand total: $160,000 2020 Dr. Fei Geng - HSG - $7,500 Dr. Brett Thombs - SPIN - $16,950 Dr. Maggie Larché - HSG - $10,000 SJHC London - $35,300 St. Joseph Hospital Hamilton - $10,000 SPIN - $9,500 Grand total: $88,750 2019 Dr. Brett Thombs - SPIN Jewish General - $25,000 Dr. Brett Thombs - SPIN - $16,666 Dr. Fei Geng - HSG - $15,000 Grand total: $56,666 *Please note that no grants were awarded in 2018 2017 Dr. Brett Thombs - SPIN Jewish General - $65,000 Dr. Jean Luc-Senécal - CHUM - $20,000 Dr. Ronald Laxer - Sick Kids - $20,000 St. Joseph's Healthcare - HSG - $30,000 Dr. Janet Pope - St. Joe's London - $35,000 Grand total: $170,000 *Please note that no grants were awarded in 2018 2016 Toronto Western General - $35,000 Dr. Ronald Laxer - Sick Kids - $6,800 Dr. Murray Baron - CSRG - $25,000 Dr. Janet Pope - St. Joe's Healthcare - $35,000 St. Joseph's Healthcare - HSG - $25,000 Grand total: $126,800 2015 Dr. Murray Baron - CSRG - $50,000 Dr. Sindhu Johnson - Toronto - $100,000 Dr. Ronald Laxer - $4,500 Grand total: $154,500 2014 Dr. Murray Baron - CSRG - $2,000 Dr. Jean-Luc Senécel - CHUM - $50,000 Dr. Sindhu Johnson - Toronto - $3,000 Dr. Brett Thombs - SPIN Jewish General - $30,000 Grand total: $85,000 *Please note that no grants were awarded in 2013. 2012 Dr. Joseph's Healthcare - HSG - $152,000 Dr. Murray Baron - CSRG - $70,000 Dr. Andrew Leask - Western University - $50,000 Dr. Jean-Luc Senécal - CHUM - $50,000 Grand total: $322,000 *Please note that no grants were awarded in 2013. In partnership with Scleroderma Canada, Scleroderma Society of Ontario is thrilled to award monetary grants to physicians, researchers, organizations and more who prioritize scleroderma research, treatment and diagnose. Since 2012, Scleroderma Society of Ontario and Scleroderma Canada have provided over $1 million in grants to support scleroderma research, awareness, and advocacy. We are proud to celebrate and recognize our grant recipients and the work they do to support our mission and the scleroderma community. Below is a list of previous grant recipients.

Upcoming Events Open House Tue, Dec 16 Hamilton Join us for a Holiday Open House at our Hamilton, ON office. It’s a chance to connect with our team, see the space, and learn more about the exciting initiatives we have planned for the year ahead. RSVP

Together, we’re improving lives for people living with scleroderma. The Scleroderma Society of Ontario is dedicated to increasing awareness, supporting patients and caregivers, and advancing research toward better treatments and a cure. Find Support Donate Now Open House Tue, Dec 16 Hamilton Join us for a Holiday Open House at our Hamilton, ON office. It’s a chance to connect with our team, see the space, and learn more about the exciting initiatives we have planned for the year ahead. RSVP At Sclerocare, we're devoted to empowering those with scleroderma by fostering connections and providing accessible, community-driven resources for support. This free, web-based platform is designed to help you feel more informed, connected, and confident in managing life with scleroderma, all in one place. What you can do with Sclerocare: Build Your Medical Resume – Keep key details about your health journey organized and ready to share with your care team. Connect & Ask Questions – Join patient forums to exchange experiences and get answers from a supportive community. Explore Research – Stay up to date with the latest scleroderma studies, explained in easy-to-understand language. Learn Your Way – Browse educational infographics and listen to audio clips that break down complex topics simply. Register for ScleroCare Learn More Make Your Impact - Donate Today When you give, you’re helping us provide support, connection, and hope to those living with scleroderma, while driving research and programs that make a real difference. Patient Impact Survey Results Our 2024-2025 Patient Impact Survey Results are now available. Read the Survey results #MySclerodermaStory Everyone has a scleroderma story. Whether you live with scleroderma yourself, care for a loved one with scleroderma, or just feel passionate about advocating for the sclero-community - your story matters and makes a meaningful impact on the scleroderma community. We invite you to hear from our Board of Directors President, Marc DiRosa, and his #SclerodermaStory Click here to view more scleroderma stories and how you can share yours.

Patient Support Peer-to-Peer Support Groups Scleroderma Society of Ontario believes that peer support can significantly improve patient's wellbeing and is an effective way to increase self-esteem and self-efficacy to achieve personal goals. For years, SSO has been offering peer-to-peer support groups to scleroderma patients and loved ones as a way to connect to the scleroderma community, learn more about the disease, and various coping mechanisms for scleroderma symptoms. Since the onset of the pandemic, SSO's peer-to-peer support groups have been hosted virtually via ZOOM and often include a guest speaker. Registration is free and the group sessions are hosted casually to ensure a comfortable environment. Participants are welcome to join with camera off or on, actively engage, or listen. How you choose to participate is up to you! Upcoming virtual support groups will be posted on our social media. Follow us to stay informed! Would you like to begin a peer-to-peer support group in your region? Scleroderma Society of Ontario is here to support you along the way. Email info@scleroderma.ca to learn how. Patient Resources Scleroderma Society of Ontario supports scleroderma patients and caregivers by sharing updated articles, webinars, and more. If we come across a helpful resource, we'll be sure to share the news on social media and link the resource here. If you're looking for peer-reviewed or academic research, please visit our Research page. Click on a category below to find resources.

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SPIN The Scleroderma Patient-Centered Intervention Network Scleroderma Society of Ontario works closely with the Scleroderma Patient-Centered Intervention Network (SPIN) to help individuals living with scleroderma manage their symptoms, access resources and medical professionals, facilitate research, and more. We encourage scleroderma patients and their families to register for the Spin-Share online toolkit here . Existing and upcoming resources include: Spin-hand for hand function Spin-self for self-management Spin-coach for appearance changes Spin-cope for emotions And more!

Clinical Trials Clinical Trials What are clinical trials? Clinical trials are prospective biomedical or behavioural research studies on human participants designed to answer specific questions about biomedical or behavioural interventions, including new treatments and known interventions that warrant further study and comparison. Pre-clinical studies: When researchers develop new drugs, the first tests are called pre-clinical studies. These tests are done using cells, tissue samples or animals. If the pre-clinical test results are promising, the next step is a clinical trial. Clinical trials: Clinical trials are studies to find out whether a drug is safe and effective f or people. The people who take part in trials are volunteers. They may be: Healthy people who want to help move medical knowledge forward Patients with a disease Sponsors The person or organization that tests a drug is called a sponsor. Health Canada does not sponsor or conduct drug research. Sponsors of clinical trials are usually: Drug companies Researchers from a hospital, university or research organization Clinical trial application Before conducting a trial, the sponsor submits a clinical trial application to Health Canada. Our scientists review the application to make sure: Drugs are used in the right way for the patients being studied Any risks in using the drug are lowered as much as possible The best interests of the people taking part in the trial have been considered Goals of the trial can be met Clinical trials in Canada must follow Division 5 of the Food and Drugs Regulations and good clinical practices . They must: Protect the health of the people in the trial Be well designed and conducted by trained professionals Be monitored and side effects reported Be reviewed by a Research Ethics Board About Clinical Trials for Drugs Four Phases of Clinical Trials Phase 1: These trials test an experimental drug on a small group of people for the first time. The purpose is to: Look at the drug's safety Find out the safe dosage range See if there are any side effects Phase 2: The drug is given to a larger group of people (usually 100 or more) to: Gather data on how well the drug works to treat a disease or condition Check the drug's safety on a wider range of people Figure out the best dose Phase 3: The drug is given to even larger groups of people (usually 1,000 or more) to: Make sure it is still effective Monitor side effects Compare it to commonly used treatments Collect information about the drug that will allow it to be used safely on the market Phase 4: These trials take place after the drug is approved and is on the market. Information is gathered on things like the best way to use a drug and the long-term benefits and risks. Possible Benefits When you take part in a clinical trial, you help others by moving medical research forward. Also, if you have a disease, there could be personal benefits, such as: You may get early access to a new treatment with positive results The treatment may cure or control your condition or improve your quality of life You may get more expert health care from the research teams that are involved in the study Interested in learning more about clinical trials? Click here .

About Scleroderma What is scleroderma? Scleroderma is a rare, progressive, and chronic autoimmune connective tissue disorder that causes collagen accumulation. “Sclero” means “hard”, and “derma” means skin – together, you have scleroderma but hard, thickening skin is not the only characteristic of the disease although it is amongst one of the most common. Less visible, but of major importance, as the vascular lesions that occur in the small blood vessels which can affect major organs. Normally, collagen helps to keep tissue soft however, in scleroderma, the overproduction of collagen causes the opposite effect. This results in thickening, hardening, and scarring of tissues. These affected tissues can be further compromised by reduced blood flow through the small blood vessels. Learn more about treatment and diagnosis of scleroderma here. Types of scleroderma 1 2 Localized scleroderma Localized scleroderma is limited to the skin and surrounding tissues and does not affect internal organs. This type of scleroderma can improve or go away on it's own over time however, it does cause damage when the disease is active (e.g., skin changes). Localized scleroderma presents itself as either morphea or linear. Some people have both morphea and linear scleroderma. Read more Systemic scleroderma Systemic scleroderma affects the skin as well as the underlying tissues and is characterized by vascular lesions in blood vessels and major organs. System sclerosis is a further sub-divided into three distinct forms: Limited Systemic Sclerosis, Diffuse Systemic Sclerosis, and Sine Systemic Sclerosis. Read more Every year, in partnership with Scleroderma Canada, Scleroderma Society of Ontario provides funding to physicians and researchers seeking to develop scleroderma findings for the purpose of diagnoses and treatment. Stay informed with up-to-date research by following us on social media or frequently checking our Research page. Scleroderma What causes scleroderma? The cause of Scleroderma is currently unknown. Scientific evidence shows that scleroderma is not contagious, not infectious and not cancerous, while studies of twins also suggest that scleroderma is not inherited. It can affect men and women of all races and ethnic groups at any stage of life, from infancy to late adulthood. Recent research indicates there may be some external factors that can trigger scleroderma in people who are predisposed to the disease. There is also some research suggesting viral and bacterial infections may start the development of the disease. Some environmental factors have now been identified as potential triggers for the development of a scleroderma-like condition. Some workers in the plastics industry using polyvinyl chlorides (PVC) have developed a scleroderma-like condition. Exposure to PVC may be occupational, or through a variety of ordinary items like car interiors, water pipes, plastic food wrappers, and carpets. Everyday exposure levels may be enough to induce ‘multiple chemical sensitivity syndrome’ in some people. Other substances such as silica, and epoxy resins can also cause a condition which has the features of scleroderma. There is a good deal of evidence that silicone implants or occupational exposure to silica can cause the disease, and patients with autoimmune disorders such as scleroderma sometimes dramatically improve when their silicone implants are removed. Solvents such as those found in typewriter correction fluid, paint removers, and other products have also been linked to scleroderma. Contaminated rapeseed oil, sold as olive oil in Spain in the early 1980's resulted in many people dying of a condition called ‘toxic oil syndrome’. Some of the survivors of this condition went on to develop a scleroderma type illness. Scleroderma caused by environmental factors appears to respond better to treatment than scleroderma from an unknown cause. Doctors have traditionally believed that the disease occurs spontaneously and cannot be cured, but a growing number of experts suspect an autoimmune response to environmental toxins. Although some environmental triggers have been identified, it is important to recognize that for most people with scleroderma, the cause is unknown, and environmental factors may not be involved at all.* Is scleroderma a genetic illness? Scleroderma is not considered a hereditary disease, however, some families are more affected by autoimmune disorders than others. Although scleroderma is not directly inherited, some scientists feel there is a slight predisposition to it in families with a history of rheumatic diseases. When examining the role inheritance may play in acquiring scleroderma, three main factors come into play: family history, genetics and ethnicity. A family history of the disease is the strongest risk factor for scleroderma, but even among family members, the risk is very low at less than 1%. Genetic factors appear to play a role in triggering the disease, but most cases are unlikely to be inherited. Preliminary research suggests that patients with certain gene variations may be more susceptible to scleroderma than those who do not carry these variations. Finally, limited data suggests that ethnicity may also play a role. African Americans and Native Americans generally have more severe scleroderma than Caucasians. These findings suggest a hereditary or genetic component to scleroderma and other autoimmune disorders. Studies suggest that the risk is highest for Choctaw Native Americans, followed by African-Americans, Hispanics, Caucasians and finally Japanese Americans.* Is there a cure for scleroderma? Currently, there is no cure for scleroderma however, there is a great deal of hope for improved outcomes in people diagnosed with scleroderma. The past decade has seen huge advances symptom treatment and management. Survival rates amongst those diagnosed are much improved as is the quality of life. Fortunately, scleroderma research has become a very popular field and there are many promising studies being conducted at this time. Does scleroderma cause tiredness? Everybody gets tired from time to time. Fatigue from scleroderma, however, is different from normal tiredness because it is often unrelated to physical exertion and not improved by getting enough rest. For many people, fatigue from scleroderma is debilitating and impacts the ability to go about daily activities more than any other symptom of the disease. Of the more than 400 Canadians with scleroderma surveyed in the recent Canadian Scleroderma Research Group survey, almost 90% said that they experienced fatigue at least some of the time, and more than 70% said that it had a moderate to severe impact on their ability to carry out normal daily activities. Many factors contribute to the fatigue experienced by people who have scleroderma, and there is no easy remedy. There are some steps that can be taken to reduce the impact of fatigue. Light, consistent exercise can help keep the body strong and boost energy. Similarly, eating a nutritional diet and maintaining a healthy weight can help combat fatigue. Finding enough time to rest, pacing oneself through the course of the day, avoiding overexertion and managing stress are all critical to easing fatigue.* Does scleroderma cause depression? It is important to distinguish clinical depression from the sadness and other emotional distress that often go along with living with a disease like scleroderma. Clinical depression is characterized by a low or sad mood most of the day, almost every day, or the loss of interest in all, or most activities, along with a number of other emotional and physical symptoms. Compared to approximately 5% of people in the general population who have depression at any given time, the rate may be as high as 15% or so among people with diseases like scleroderma. When symptoms of depression are present that make it difficult to cope with living with scleroderma or any other aspect of daily life, it is a good idea to consult with a health care provider. Although most people with scleroderma do not have depression, many experience other forms of emotional distress, such as bouts of sadness, frustration, and anxiety or worry related to living with the condition. While these may or may not constitute clinical depression, people who experience significant distress may benefit from professional support. Others may find different kinds of support useful, such as from family, friends, or others living with scleroderma. Staying active, both physically and socially, is also helpful for many people.* I am having trouble sleeping is this normal? It is estimated that approximately 30% of the general population complains of sleep problems with about 10% reporting problems that affect their ability to function. There has not been very much research on sleep in scleroderma, but there is reason to believe that sleep problems may be much more common among people with scleroderma when compared to the general population. A recent survey of more than 400 Canadians with scleroderma found that 76% of those surveyed reported difficulty sleeping at least some of the time and 59% said that poor sleep affected their ability to function at least moderately. Many studies have found that older people and women, particularly in the postmenopausal years, have difficulty with sleep and that sleep can be affected by cigarette smoking, alcohol and coffee consumption, and many prescription medications. Depression, anxiety, and worry have also been linked to poor sleep. For many people living with scleroderma, pain can play a major role in sleep problems. Gastrointestinal problems can also be uncomfortable and painful, making sleep difficult. Given the importance of sleep, it is important to let your health care provider know if you are having any problems with your sleep.* Why do people with scleroderma get heartburn and difficulty swallowing? Heartburn is caused by the dysfunction of the valve that separates the stomach and the esophagus, which allows stomach acid to flow backwards up into the esophagus thereby causing heartburn. Abnormal contractions of the esophagus can also occur, which prevent acid from being cleared properly leading to difficulty swallowing. Strategies for coping with heartburn include using over the counter medications that neutralize or reduce stomach acids, elevating the head of the bed, eating smaller meals and avoiding foods that cause heartburn. Chewing food well, eating slowly, and drinking fluids with meals can also help with heartburn. Why does scleroderma cause sore hands? People with scleroderma have thickened and tight skin, which can lead to stiffness and reduced motion of the joints in affected areas. Some studies have shown that those with scleroderma may benefit by range of motion exercises where the fingers, hands and wrists are stretched daily to keep them moving and mobile. Other studies have found connective tissue massage with joint manipulation can also be effective in combating stiffness. Why does scleroderma cause dry mouths? Dry mouth, also called Sjogren’s Syndrome, can be a troublesome symptom for those affected. Staying hydrated by frequently sipping beverages, sucking on hard candy or chewing gum may all help. Avoiding foods that dehydrate the mouth and body such as alcohol, caffeine or salty foods can prevent further dryness. Sometimes the mouth is so dry that it becomes difficult to swallow, in which case drinking liquids while eating may also help. Will smoking make my scleroderma symptoms worse? Smoking is not a healthy choice for anyone. For people living with scleroderma smoking can have significant adverse effects on the the respiratory, vascular and gastrointestinal tracts. Lung problems can be very severe in scleroderma patients and smoking drastically complicates these problems. Smoking constricts blood vessels and can increase the severity of Raynauds symptoms. Smoking also makes the mouth dry which can worsen the symptoms of Sjorgens syndrome. Stop smoking to improve symptoms, quality of life and longevity. Is erectile dysfunction related to scleroderma? Males living with scleroderma suffer more frequently from erectile dysfunction compared to males in the general population. Treatment can be a challenge as there is limited research. Doctors are likely to begin by ruling out any other potential causes of erectile dysfunction. Learn more about scleroderma by checking out our frequently asked questions (FAQs) below!

Host an Event Host an Event Interested in hosting an event in support of Scleroderma Society of Ontario? We'd love to help! Third-party events are an important part of the scleroderma community. By hosting an event in support of SSO, you are not only helping build a stronger scleroderma community, you also have the opportunity to gather your friends and family for a great time! Event Ideas SSO is here to help you, every step of the way. Check out some of the third-party event ideas below to get started: Spring/Summer Events: Host a lemonade stand Donate proceeds from a garage sale Host a BBQ with proceeds supporting SSO Host an a-thon (walk-a-thon, bike-a-thon, bike-a-thon and more!) Host a bake sale Host a car wash Fall/Winter Events: Host a games night with proceeds supporting SSO Host a hot chocolate stand Host a bake sale Host a yoga class with proceeds supporting SSO Ready to get started? Reach out to us at info@scleroderma.ca for next steps!

My Scleroderma Story My Scleroderma Story Scleroderma Society of Ontario launched "My Scleroderma Story" in June 2022 to support our largest fundraising campaign of the year, Make a Move for Scleroderma. We were thrilled to see how much momentum the trend carried and the support we received from our community. By sharing scleroderma stories, we can amplify awareness and knowledge of the disease growing our community of supporters, one scleroderma champion at a time! You can share your scleroderma story, even if you don't live with scleroderma yourself. For example, you could be... A friend or family member supporting someone who lives with scleroderma A doctor who supports patients who live with scleroderma, or a doctor that is/has researched scleroderma An individual and/or volunteer who is passionate about supporting and spreading awareness for scleroderma Anything! Ready to share your story? Submit your story through this form . Email us at info@scleroderma.ca to learn more. #MySclerodermaStory shared by SSO Board Member, Silvia Petrozza.

Leadership Meet the Team! Scleroderma Society of Ontario is made up of a small (but mighty) team based out of Hamilton, Ontario. Want to join our team? Check out our Career Opportunities page for more information. John Malcolmson Executive Director Karol Bedoya-Carvajal Senior Manager, National Programs & Advocacy Kylie Wolfenden Lead of Communications, Strategy and Activation Riva Lewis Fund Development Specialist Board of Directors Our volunteer Board of Directors live all across Ontario and provide guidance to SSO. Follow us on social media to find out when and how to attend our Annual General Meeting. Marc DiRosa Past President David Sauvé Vice President Rebecca Wissenz Director Jason Worron Director Jason St. Croix Director Silvia Petrozza Director Lauren Sauvé Director