My name is Don Legere and I have had Scleroderma for 19 years. In 2010, I started to develop Interstitial Lung Disease (ILD) and in 2015, I was placed in a stem cell transplant trial at Northwestern University that stopped my progression for only a year and a half. As my ILD has continued to progress, I am now going through testing to determine if I will be eligible for a double lung transplant.
I am past President of the Board of Directors for the Scleroderma Foundation, NewEngland Chapter. For approximately eight years my wife Cathy and I have been running a support group in New Hampshire, where we promote information, encouragement, and hope to hundreds of people living with this disease. Over the years, I have been involved in several clinical trial studies. I feel the importance of these trial studies is essential to helping doctors, researchers and scientists find a cure for Scleroderma. It was through participating in research in the lab of Dr. Jonathan Garlick and his team, that I have donated my cells for them to grow Scleroderma skin that they use for test drugs that may better treat scleroderma someday. Because of the work thatDr. Garlick and his team are doing, it has encouraged me to continue to participate in trial studies and promote research to find a cure.
This bi-directional communication between Dr. Garlick’s research team and the scleroderma patient community ensures that the concerns of our scleroderma patient community will be represented as they seek new and effective treatments.
Over these years, I have seen how Dr. Garlick’s communication with the scleroderma community listens to meet people with scleroderma where they are, to better understand what they care about so they can participate as true partners in his research. His civic science initiatives bring researchers into conversations with our patient communities and position them as research partners. His lab helps us feel included in his research. When we donate our cells to his research, we are invited to his lab to learn about his research. His lab also learns about the needs of the scleroderma patient community by asking how his research can impact the health and well-being of people living with scleroderma. His research team learn what scleroderma patients find most challenging in their daily lives and what gives them hope.
Dr. Garlick’s civic science approach has organized educational symposia for our patient support groups, where his team listens to patient input about how to best to advance their research goals. This bi-directional communication between Dr. Garlick’s research team and the scleroderma patient community ensures that the concerns of our scleroderma patient community will be represented as they seek new and effective treatments. In this way, Dr. Garlick’s Civic Science Collective overcomes barriers that limit a more inclusive approach to participation of scleroderma patients in research. In this way, he builds patient-driven innovation by fostering relationship of trust with patient populations.
I feel very fortunate and so extremely grateful for the support that I have from Cathy and my four children and their families for the love and encouragement for me to keep on fighting. Nine years ago, my daughter Maria started the “Stroll for Scleroderma”fundraiser in my honor and for all those living with this disease to raise money to find a cure. Over the past nine years they have raised over $150,000 that they have donated to continue to promote research like that which is happening in Dr. Garlick’s lab. It’s also very encouraging that Dr. Garlick and his team have supported the “Stroll for Scleroderma” all this time. I don’t know of a better way than his and his team’s participation in these events to help connect and promote hope in the scleroderma community. By continuing to work together through participation in research studies sponsored by the National Scleroderma Foundation we will eventually find the cure for this and other autoimmune diseases. Through his important connection with our patient community, Dr. Garlick’s lab is by our side on our “Walks for Scleroderma” that builds a culture of care and collaboration into our team science approach. I am very thankful to be able to participate in the studies with Dr. Garlick’s lab and will continue to do so whenever he may need me.
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Don Legere is the past President of the Board of Directors for the Scleroderma Foundation, New England Chapter and a national leader in patient advocacy for scleroderma. Don has had scleroderma for 19 years. Over the last decade, Don and his wife Cathy have been running patient support groups in New Hampshire, where they promote information, encouragement, and hope to hundreds of people living with scleroderma. Don, Cathy and their four children and their families run the annual “Stroll for Scleroderma” fundraiser that has raised over $150,000 to find a cure for scleroderma through research.
