Like the rest of us, Cure MAPT FTD co-founder Annika Roll has a personal connection to MAPT-related FTD: Her mom Jenny has FTD along with five of her mom’s siblings. When Annika first learned that her mom had the disease, she wasn’t yet ready to find out if she was positive for the MAPT mutation herself. She was only 18 and wanted to wait until she was in a more stable place in her life.
But she did want to help find a cure, and, when her aunt Barb Frommell proposed sharing their story with journalist Bob Kolker, she got on board.
“No one is going to come save us without putting our stories out there,” says Annika. That story is now The Vanishing Family.
“Something that I will cherish forever is being able to have this book that really talks about all of the struggles we've been through,” Annika says.
The critical success of the book—positive reviews in the New York Times, the Wall Street Journal, the New Yorker, and elsewhere— has been gratifying. Annika has also heard from many researchers and representatives from pharmaceutical companies who say that the book has inspired and motivated them. “I love hearing their reaction to it because some of them treat patients or study the disease, but some can be detached from what families are actually experiencing. They'll maybe only see this family once a year for a few hours. So they really get to read, in depth, what our experiences are like.”
The book includes Annika’s story of slowly losing her mother, founding Cure MAPT FTD along with Barb and others in 2023, and finally, her decision to get tested, something she agonized over. “I do have a history of depression, and I thought that I wouldn't be able to go on living, if I found out,” she says. “But that actually wasn't true. I found that it was a huge relief to know the truth.”
After her wedding in April 2024, she decided that she was ready to be tested. Learning that she was positive for the MAPT mutation was devastating, she says, but also clarifying.
“I realized I was wasting my energy on things that are not important,” she says. Knowing her status inspired her to become more active in Cure MAPT FTD and fight harder for a cure.
Annika does all the “behind the scenes” work for the organization: she worked on creating the website, designed the organization’s logo, helps manage the social media accounts, and designs the newsletter. She also attends four or five conferences a year and designs the nonprofit’s postcards, tote bags, and posters. She is confident that this work is starting to pay off. “Now, for the first time, there will be trials that are being designed to include MAPT FTD,” she says. “This is the first time many of us in Cure MAPT FTD have actually felt real hope.”
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