In a recent interview with NPR member station WUNC, for their podcast “Embodied,” brothers Ansel Dow, 31, and Cosmo Hinsman, 26, discussed the devastating impact of genetic FTD on their family, and how their lives changed with the knowledge that they, too, carry the MAPT gene mutation, one of the three common genetic variants associated with hereditary FTD.

The brothers watched as five of their maternal aunts, and finally their mother Peggy, succumbed to FTD. Peggy, once a chemistry and physics teacher, gradually lost her ability to work, maintain empathy, and manage basic daily tasks.

In 2017, at the Mayo Clinic, the brothers received confirmation from a genetic counselor they were carriers of the genetic mutation causing FTD. The moment forever divided their lives into “before” and “after.”

Ansel’s first reaction was disbelief. For Cosmo, the emotions were initially repressed, but he recalls having “a really strong urge to play poker”—perhaps as a way to engage with chance and risk when the ultimate outcome felt predetermined. “You get so paranoid,” Cosmo explains about living with this knowledge. “Any kind of disordered thinking or forgetting things, you think, oh, this is it.”

The knowledge has profoundly influenced the brothers’ choices. They each decided against having biological children, not wanting to risk passing the mutation to another generation. Ansel recently got a vasectomy to ensure this decision is permanent.

The diagnosis shaped their approach to education and career. Cosmo, knowing FTD affects language abilities, threw himself into academic pursuits, recently completing an MFA in fiction writing. He said he was driven by “the desire to be a full and real person in the world before that was taken away from me.”

For Ansel, the knowledge has led to a different urgency—to experience joy and build meaningful relationships while he still can. “There are things that I’m able to enjoy in a different way, knowing that I won’t always be able to enjoy them,” he explains.

Both brothers face unique challenges in relationships, but they’ve found that their family’s old approach, which they described as secrecy and shame, doesn’t have to define their experience. “Everyone has received this [news] in a way that is really graceful,” Ansel notes.

Ansel has found purpose in advocacy work through Cure MAPT FTD, a global team of families who have been affected by MAPT FTD; he’s on the organization’s executive team.

“It has been so transformative for me,” he explains. “For the first time ever, I’ve met people outside my family who had the same experience.”

Cosmo remains more private, focusing on his artistic work and finding that being “really good at things” provides relief from despair.

Despite their genetic inheritance, both brothers maintain relationships with their mother, finding new ways to connect through activities she still enjoys. They’re learning to live with what Ansel calls “a known clock” while not letting that knowledge overshadow the present.

As they navigate their late twenties and early thirties, Ansel and Cosmo’s story illustrates that even facing near-certain loss, there’s room for hope, growth, and meaningful contribution through advocacy, art, and connection.

Are you evaluating your risk for FTD? AFTD strongly encourages genetic counseling before undergoing a genetic test. A genetic counselor can help you better understand your potential genetic risk and educate you on the benefits and risks of genetic testing for FTD: you can learn more on our genetics page.

If you have questions about FTD genetics, testing, or counseling, contact AFTD’s HelpLine. You can reach the HelpLine at 1-866-507-7222 or info@theaftd.org.