Daisy Duarte is one of my personal heroes. She's not a member of congress, a policy wonk, or a world-renowned research scientist but she's disrupting the way we think about Alzheimer's on the Hill, in research labs, and in communities across the country. Daisy is a proud Latina, a full-time caregiver for her mother with Alzheimer's, and a clinical trial participant. And as the number of Latinos with Alzheimer's is projected to grow dramatically over the next 30 years, she's exactly the kind of voice we need in the fight against Alzheimer's today.
From her difficulty getting a timely and accurate diagnosis to her costly emergency room visit, Daisy's story is typical of many Latino families struggling with Alzheimer's. However, Daisy is far from stereotypical. After all, she once owned a Cubs bar in the middle of St. Louis. This same determination and optimism has transformed Daisy into a fierce advocate in the fight against Alzheimer's. She actively shuns the stigma oftentimes associated with dementia in the Latino community and openly shares her family's story with physicians, researchers, policymakers, and the press - a powerful and change-making combination. Second, Daisy is enrolled in an Alzheimer's clinical trial at the Washington University School of Medicine in St. Louis, making her one of the few Latinos engaged in clinical research of any kind, but particularly in brain health research. According to Daisy, "If my participation contributes to finding a cure for someone in the future - whether it's me or my nieces and nephews - it will all be worth it." Daisy is working with the UsAgainstAlzheimer's Latino Network to make the clinical research enterprise more inclusive of minorities.
Daisy recently sat down with NPR's Latino USA to talk about the impact of Alzheimer's on her family, including her decision to seek genetic testing. Daisy's willingness to tell her story honestly and intentionally truly inspires. Listen here and get to know my friend Daisy.
Jason Resendez is the Executive Director of the LatinosAgainstAlzheimer's Network and Coalition, a network of UsAgainstAlzheimer's.