Speaker: Wanda Smith
Wanda Smith: Hi, my name is Wanda Smith, and my mother had progranulin. Well, she really had, she was diagnosed with Alzheimer's disease to begin with. And then at the point that she passed away, we donated her brain to science and, uh, that autopsy report came back that she didn't have Alzheimer's at all. She didn't have any plaques or tangles. It wasn't until many years later that we learned she had progranulin, a form of FTD frontotemporal dementia.
Why is genetic testing important for individuals and families impacted by FTD?
Wanda Smith: genetic counseling and testing can really be meaningful knowledge for everyone in the family, especially those who are symptomatic,
Why do you think participating in clinical trials for FTD important?
Wanda Smith: Why do I think participating in clinical trials is important. Well, it changes lives for generations. We, you know, with clinical trials, it's a process. It's progress is stepping forward into a new paradigm. Clinical trials are so important in that they really Help us to understand the mechanism with progranulin, it's a deficiency. At some point the um body stops producing it underproduces progranulin. In clinical trials, they can measure what's causing progranulin to uh rise, what keeps it sustainable over a long period of time, all the questions that we need to know about this biological mechanism. Clinical trial will answer for us. Clinical trials is just important because it's the future.
