“I strongly believe that research provides hope, and fundraising is one way to turn hope into action,” says Landry (dx 2015). Diagnosed with CREST syndrome, or limited scleroderma, at the age of nine, she has spent years turning her personal experience into fundraising efforts that support scleroderma research.
Each June, during Scleroderma Awareness Month, Landry channels her story into action. “I especially love sharing donation links with family and friends to the Scleroderma Research Foundation because their primary goal is to fund research that helps us better understand scleroderma, develop more effective treatments, and ultimately find a cure,” she says.
Social media has become her main tool for spreading the word. “I enjoy attaching photos to my posts showcasing my own journey with scleroderma, as well as photos of myself and others in the scleroderma community,” Landry says. “I feel that sharing these personal experiences helps provide a closer look into our lives.”
Her advice for other volunteers comes back to authenticity. “I would strongly suggest making your fundraiser personal in any way possible. Sharing your own connection to scleroderma and why fundraising in support of research is meaningful to you is so important,” she says. “It can help others better understand the impact their donation can truly make.”
Landry’s connection to scleroderma began early. Her path to diagnosis started with symptoms that were easy to overlook: acid reflux, esophageal discomfort, and small lumps on her elbow and knee. “My pediatrician decided to run lab tests to rule out an autoimmune disease, which led to finding that I had a positive ANA antibody,” Landry remembers. “Looking back, I feel incredibly fortunate to have had my rheumatologist guiding me and my family through my diagnosis and treatment.”
Growing up with scleroderma meant learning early that there was no returning to “normal” after treatment. “Beginning new methods of treatment, procedures, medications, and going to specialist appointments instantly became regular activities or duties for me, when these were not ‘regular’ for other children my age,” she explains.
What helped, Landy says, was community. “I felt so blessed to meet a strong, kind group of other children and adults at scleroderma conferences, most of which were also diagnosed young,” she says. “Learning that there were other people going through what I was going through made and continues to make my fight with scleroderma feel more manageable in a way.”
To those considering a donation, Landry’s message is simple: “Supporting scleroderma research means supporting all those who have been affected by this disease. Every contribution matters!”
And to those who already have, she offers heartfelt thanks. “Your generosity means so much, and your support provides me with hope,” Landry says. “Hope for a cure and hope for a future where scleroderma does not take lives.”
We are so grateful to Landry for her dedicated efforts to uplift the scleroderma community. Inspired by her story? You can fundraise for the SRF too. Learn more below.
