After an emotional meet-and-greet, the families grilled pharma scientists about why they haven’t produced a new AD drug in more than a decade, and made impassioned pleas for their symptomatic relatives to get access to investigational drugs. They heard an update of the ongoing clinical DIAN-TU trial of solanezumab and gantenerumab. They exchanged tips on how to deal with the practical and financial problems when dementia strikes in the prime of life. They shared how they are coping with their genetic test results. In telling their stories, family members brought pharma, academic, and regulatory scientists to tears.
By the end of the day, the information and emotion together created a collective sense of being part of something unique, of a movement larger than even autosomal-dominant AD itself. “In 2050, 135 million cases of Alzheimer’s disease are predicted worldwide unless we change the course of history. You are empowered to do that,” Jeffrey Cummings of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas, told an energized audience. The families—whose children have become symptomatic since their parents in the 1990s helped discover APP and presenilin— broke into spontaneous applause when Cummings declared, “We cannot lose another generation to Alzheimer’s disease.”
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Founded in 1996, Alzforum is a news and information resource website dedicated to helping researchers accelerate discovery and advance development of diagnostics and treatments for Alzheimer’s disease and related disorders.
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