Like many in the lupus community, one new member, Ali Vanderloop, is turning a difficult diagnosis into powerful action by joining with the Lupus Research Alliance to raise public awareness for the disease and the importance of research.
As all too many have experienced, Ali’s diagnosis was both challenging and overwhelming. Even with lupus in her family, she went from her teens through her twenties with symptoms that ranged from severe fatigue, joint pain and rashes, and numerous misdiagnoses all along the way. Exemplifying the power of perseverance and never giving up, Ali finally learned she has lupus. Unfortunately, the diagnosis came in the form of an email from her doctor without a conversation about how she would manage the rest of her life with this difficult disease. “Knowing very little about lupus and how it would affect me—my ability to work, to get pregnant, to raise a family—I had never felt so powerless and alone,” Ali reflects.
But Ali quickly shifted into gear and took matters into her own hands. That’s when she discovered the LRA through her online searches.
“When I read that the Lupus Research Alliance is the world’s largest private funder of lupus research, I knew I wanted to work with this organization! The website answered many of my questions about the disease, and I felt hopeful that the research they fund will allow my lupus to be managed and someday cured.”
Armed with resources and the courage that came from connecting with the LRA and lupus community, Ali found a new doctor who spent time with her, explaining the disease, and going over all her concerns.
“I realized how important it is to keep advocating for yourself, to push for a diagnosis and a doctor you feel comfortable with. Being heard, taking control, even with a disease that’s unpredictable, is so empowering.”
Ali decided that she and her husband, 2024 NASCAR Truck Series Champion Ty Majeski could help drive awareness of lupus and accelerate research for a cure. By partnering with LRA—Ali, Ty, and his ThorSport Racing team are launching a campaign for Lupus Awareness Month that aims to drive support, foster education, and champion a future free of lupus by engaging the national racing community and beyond.
Inspired by his wife Ali and the lupus community, Ty will wear custom-designed LRA race shoes throughout all his races during Lupus Awareness Month. Later in May, the shoes will be auctioned off through the LRA website with proceeds benefiting LRA’s mission to improve treatment and find a cure.
More than just eye-catching gear—these shoes are a statement of determination, resilience, and hope.
“Ty and I have found so much strength, and hope that others will too, from being part of something bigger than the two of us. Of finding a community, of getting involved, of joining with the LRA in attaining what we all long for—a world free of lupus through the power of science.”
With this campaign, Ali hopes to empower others with two valuable lessons she has learned through her lupus journey. “If you’re living with lupus, I urge you to open up to people. No one can see what you feel. You have to tell them, so they know how to help.”
And for those who care for someone who has lupus, Ali encourages asking questions, even when the person looks perfectly healthy. “Be that support system we need. Listening and hearing means more than you’ll ever know.”
