WHO WE ARE

Our purpose and our three core pillars. 

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!

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

  1. Developing patient education and bring patients together in peer to peer groups

  2. Granting research funding requests and facilitating grant requests for external research funding

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

Letter from our President, Marc DiRosa

Dear patients, medical experts, supporters and advocates,

 

As President of the Scleroderma Society of Ontario I am deeply humbled and honoured to chair a remarkable board of directors and to expand on the vital work being done by our organization. As with many of our volunteers, the Scleroderma Society of Ontario holds an important place in my heart and my sincere appreciation goes out to the board of directors for this opportunity. 

 

I would also like to thank outgoing President, Karen Nielsen, for her tireless advocacy and dedicated service to the SSO. Her passion for helping those in the Scleroderma community was evident daily and our organization would not be in the position it is today without her leadership. I would also like to thank outgoing board member Stephanie Kulakowsky for her efforts throughout the years and am excited to welcome our newest members Silvia Petrozza and Vanessa Cook.

 

Having been with this organization since 2016 there has been a common refrain amongst our patients and families alike that they had no idea what scleroderma was until their lives were forever changed by the disease. My introduction to this rare disease was no different. When my Aunt Linda was first diagnosed, our family had no idea what the disease was or the severe impact it would have on her life. There were no networks for patient support, there were no organizations assisting those with the disease, and there were limited resources for best practices on how to live with the disease. My aunt fought hard and lived a meaningful life dedicated to her family and serving others until she was eventually taken from us in 2011. As tragic and heartbreaking as this event was, the Scleroderma Society of Ontario has become a place where my family can come together around a shared purpose while honouring the life and memory of our beloved Linda.

 

Fast forward to today and the Scleroderma Society is as strong as it has ever been. We have patient support networks in cities across the province; our walks and events are raising funds and awareness; we are being heard in the offices and hallways at the provincial legislature; and we are funding necessary research that will assist our patients as we strive for a cure. While these are all commendable achievements, there is still much work to be done.

 

As President, I remain committed to the mandate of our organization and to collaborating with our team and network of partners to advance the scleroderma cause. We will work diligently to enhance our voice, to advance our agenda and to continue striving for a cure. I hope you will join us!

 

Yours truly,

 

 

Marc DiRosa, President

Board of Directors

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