ABOUT US

The Scleroderma Society of Ontario, a registered charity, was officially established in 2007 and is committed to promoting increased public awareness, advancing patient wellness and supporting research in Ontario's scleroderma community. The reasons why the SSO exist can be summed up in one overriding priority:  Supporting people with this disease in their quest for information, connections, advice, and yes, a cure!

Improved quality of life for scleroderma patients and their families through education, support, research and increased public awareness. 

The Scleroderma Society of Ontario is committed to promoting increased public awareness, advancing patient wellness and supporting research in scleroderma.

Integrity in our governance process and transparency in our communications;

Respect and compassion for our colleagues and those we serve;

Commitment to achieving our vision through inclusion and collaboration with others;

The business of the Society shall be conducted without monetary gain for it’s Members or Officers, and any profits or other accretions to the Society shall be used solely to support its objectives

By engaging in activities aligned to Scleroderma Society of Ontario's core pillars (Patient Support, Research and Awareness), we will work towards:

  • Developing patient education and bring patients together in peer to peer groups

  • Granting research funding requests and facilitating grant requests for external research funding

  • Increasing awareness of Scleroderma through out annual campaign and activities planned across Ontario

A LETTER FROM THE PRESIDENT​

Dear Patients, Medical Professionals, Supporters and Advocates: 

As President of The Scleroderma Society of Ontario I am proud to have the privilege to chair this vital organization as it continues to grow. My sincere appreciation goes out to the Board of Directors for this opportunity. 

I would also very much like to thank Rebecca Wissenz, for her dedicated service to SSO. Her passion for those affected by scleroderma, along with her wealth of knowledge, has grown the SSO to the impressive organization it is today and made a significant impact on the lives of patients across the entire country, particularly youths living with this disease.

As her successor, I am honoured to continue working toward our common goal.

I became a patient in 2004, when I was diagnosed with Diffuse Scleroderma & Polymyositis. At the time my son was 9 years old, my daughter was 2 years old and we had just moved in to our dream house in Vancouver. Things were going well and we were excited about our future. 

The news was a major shock and I was not prepared for the changes to come. Losing control of my health was devastating. From the beginning my family has been wonderful, stepping up to help me in any way they can. However; I soon recognized that I needed to help myself and find a way to take back some control of my life. Since my diagnosis, as is often the case with scleroderma patients, I have been affected by other ailments, such as celiac disease.

Fast forward to 2018 and here I am. I still don’t have control over scleroderma, but I have learned that I have plenty of control over my health. I exercise often and I eat as well as I can. I am always learning and pushing myself to do better. Last year, I returned to school to become a holistic nutritionist. My goal is to help fellow scleroderma patients take back some control through food, nutrition and exercise. It can and does make a difference.

Sitting back and giving up is not the solution. We all have a common goal and that is to improve our lives and to fight for a cure. That is why I am so proud to lead this organization.
 
As President of the SSO, I remain committed to our mission of promoting increased public awareness, advancing patient wellness and supporting research in scleroderma, in hopes of finding a cure. I also look forward to bringing scleroderma patients, caregivers and healthcare providers in every community across the country together, to share one voice. Working as one, I truly believe that we can help each other to feel hopeful and strong enough to continue the fight against scleroderma!

Yours truly, 
Karen Nielsen 
 

 

BOARD OF DIRECTORS

Scleroderma Society of Ontario is governed by a duly elected Board of Directors.
Executive management is provided by the Executive Director.

 

 

 

 

 

 

 

 

 

ALLIANCES

Scleroderma Society of Ontario welcomes the opportunity to collaborate with like-minded organizations and groups. Current partners in our vision include:

Karen Nielsen

President

Jennifer Botelho

Director

Stephanie Kulakowsky

Director

Rebecca Wissenz

Former President

Steve Kulakowsky

Director & Secretary/Treasurer

Marc DiRosa

Director

David Sauvé

Vice-President

Jason Worron

Director

John Malcolmson

Executive Director

Lacey Battaglio

Manager of Communications & Events

Maureen Sauvé

Vice-President, Advocacy & Public Relations

2018 AGM REPORT

To view our 2018 Financial Statement, please click here.

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41 King William St., Suite 202
Hamilton, Ontario L8R 1A2
info@sclerodermaontario.ca |  1-888-776-7776

©2020 Scleroderma Society of Ontario

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