Canada from 2010 to 2016, helping guide the organization with clarity, empathy, and resolve. Right up until her death, she continued to serve as Vice President of Advocacy, never stepping away from the work she believed so deeply in.

​

​Under Maureen’s leadership, both organizations were transformed into robust, vibrant provincial and national leaders that make tremendous contributions to people who live with scleroderma through highly successful awareness and fundraising, support of research, and most important to Maureen, active and effective support of people with this terrible disease. Maureen’s husband David, daughter Lauren, and brother Jason continue her work with the Scleroderma Society of Ontario through their roles on the Board of Directors. Lauren is currently serving as President.

In 2008, Maureen took her first steps towards what became an outsized role in ensuring that research meets the needs of real people with scleroderma; she partnered as a patient collaborator with the Canadian Scleroderma Research Group. In this role, she played a key role in developing and disseminating the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. This survey was one of the first major efforts to catalog concerns of people living with scleroderma, and it has since been replicated in countries that include France, the Netherlands, Spain, Switzerland, and the United Kingdom.

Maureen’s work on the National Survey led to discussions with Dr. Brett Thombs from McGill University in Montreal, Quebec, Canada about how patients, patient advocates, and researchers could work together to not just document all the challenges faced by people with scleroderma – but to do something about them. In 2010, Maureen secured seed funding from the Scleroderma Society of Ontario and Scleroderma Canada to develop this idea into something more – and a new organization was born. Two years later, the Scleroderma Patient-centered Intervention Network, or SPIN, was awarded a $1.5 million grant from the Canadian Institutes of Health Research to turn this vision into reality.

Today, SPIN is an international leader in patient-researcher partnered research. SPIN has involved over 3,000 people with scleroderma, a massive number in a rare disease context, in its research. Patients from 7 countries and over 50 specialty scleroderma care centers provide regular assessments for SPIN studies, and, in total, people with scleroderma from more than 15 countries have participated in SPIN research. Today, thanks to Maureen’s vision and dedication, people with scleroderma can attend a support group led by one of the more than 200 patient facilitators SPIN has trained; they can access, free-of-charge, a scleroderma-specific program of hand exercises to prevent loss of function (https://tools.spinsclero.com/); and, during COVID-19, many counted on a videoconference psychological and peer support program to maintain mental health. Recently, SPIN successfully tested an ambitious program where people with scleroderma work as peer educators to deliver professionally designed materials to improve patients’ ability to manage their disease and navigate health care. This program was “Maureen’s baby” – she advocated for the need for such a program from the beginning, and SPIN will be able to make it available free-of-charge to anybody with scleroderma starting later this year.

There are about 7,000 rare diseases in the world, and SPIN is a one-of-a-kind success story in patient partnered research. Maureen, in addition to being a driving force behind its creation, was a major player in SPIN’s leadership. She co-chaired with Karen Gottesman SPIN’s original organizational Patient Advisory Board. And she was a member of SPIN’s Steering Committee from the time SPIN leaders realized it didn’t make sense to have separate Steering and Patient Advisory committees. Maureen made major contributions to ensuring that SPIN asked the right research questions and developed the right patient tools, and she worked with the SPIN Team to make all of this a reality. The number of contributions that she made is far too large to share all of them. But, just for a few: As the President of Scleroderma Canada, Maureen came to Montreal and met with Robert Riggs, who led the United States National Scleroderma Foundation, and Brett Thombs, and they outlined what would become SPIN’s successful training program for support group leaders. If you go to SPIN’s online hand rehabilitation and exercise program, the first page has Maureen introducing the program to other patients. If you go to SPIN’s self-management program – the same. She worked with the SPIN Team to design the COVID-19 mental health support program. During the first weeks of COVID-19, SPIN organized an informational webinar on COVID-19 and scleroderma with a panel of experts, including Maureen as an expert patient. Hundreds of people with scleroderma attended the event, and the video has been viewed over 3,000 times. Recently, SPIN partnered with 15 patient organizations from around the world to hold its first virtual patient research event, attended by over 200 people – and Maureen hosted the event. Who else would it have been?

Through her involvement in research, Maureen developed a track record that would be the envy of many professional researchers. She was an author on over 60 academic presentations, most of them with SPIN. Outside of SPIN, she worked with the pharmaceutical company Boehringer Ingelheim as a patient collaborator and was an author on a cornerstone publication on how patients and industry partners can work together to effectively design and carry out research that meets the real-world needs of patients.

Maureen’s work led to well-deserved recognition. In 2014, she received the Canadian Organization for Rare Disorders Rare Honour Award. In 2016, the United States National Scleroderma Foundation honoured her with their Messenger of Hope Award. In 2017, Maureen was inducted into Hamilton, Ontario’s Gallery of Distinction – based on her work in scleroderma and her impact on the Hamilton business community. In 2019, Maureen was recognized with the YWCA Hamilton’s Women of Distinction Award. Since 2018, SPIN has recognized the remarkable accomplishments of its many contributors with the Maureen Sauve SPIN Inspiration Award. The committee originally tasked with setting up the award first decided to give the not-yet-named award to Maureen – but then recognized that this didn’t do justice to her contributions, and they named the award for her instead.

No numbers or lists of accomplishments can come close to capturing what Maureen did for the scleroderma community. She was a constant and steadfast source of advice, guidance, and vision. “Maureen being Maureen” was central to SPIN becoming the world leader that it has – and this is part of Maureen’s legacy. SPIN being a place where real people care about each other is also part of Maureen’s legacy. She cared deeply about people.

And, from Dr. Thombs, SPIN’s Founder and Director, “Personally, I can’t begin to put into words the importance of my relationship with Maureen. Though we are very different, we became steadfast partners and friends. Maureen was my go-to person for advice and counsel, and she had a sharp and strategic mind. She was also more fun than should be allowed in a single person. More than anything, Maureen was a dear, dear friend.”