Newswise — Brian Whitney knows he has inherited a presenilin-2 mutation that has decimated his extended family for generations and now threatens him, and perhaps his 5-year-old daughter. In a historic meeting, Brian joined 99 other people from Australia, Canada, Colombia, Puerto Rico, the United Kingdom, and across the United States for a face-to-face gathering of families of the Dominantly Inherited Alzheimer Network (DIAN). Held July 18 in Washington, D.C., in conjunction with the Alzheimer’s Association International Meeting, the autosomal-dominant Family Conference brought together people who are certain they will develop Alzheimer’s in midlife with others who already have it. People who know their genotype spent the day with people who don’t. At-risk teenagers mingled with baby boomers who lost their spouses to ADAD and are now fighting to save their adult children’s lives.
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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