{"id":256502,"date":"2025-07-11T15:27:08","date_gmt":"2025-07-11T15:27:08","guid":{"rendered":"https:\/\/www.europesays.com\/uk\/256502\/"},"modified":"2025-07-11T15:27:08","modified_gmt":"2025-07-11T15:27:08","slug":"the-lived-experience-of-ftd-brothers-explain-in-podcast-how-they-live-with-gene-linked-to-ftd","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/uk\/256502\/","title":{"rendered":"The Lived Experience of FTD: Brothers Explain in Podcast How They Live With Gene Linked to FTD"},"content":{"rendered":"

In a recent interview with NPR member station WUNC, for their podcast \u201cEmbodied,\u201d<\/a> 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. A Family Legacy of Loss <\/p>\n

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.<\/p>\n

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 \u201cbefore\u201d and \u201cafter.\u201d<\/p>\n

Ansel\u2019s first reaction was disbelief. For Cosmo, the emotions were initially repressed, but he recalls having \u201ca really strong urge to play poker\u201d\u2014perhaps as a way to engage with chance and risk when the ultimate outcome felt predetermined. \u201cYou get so paranoid,\u201d Cosmo explains about living with this knowledge. \u201cAny kind of disordered thinking or forgetting things, you think, oh, this is it.\u201d<\/p>\n

Shaping Life Decisions <\/p>\n

The knowledge has profoundly influenced the brothers\u2019 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.<\/p>\n

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 \u201cthe desire to be a full and real person in the world before that was taken away from me.\u201d<\/p>\n

For Ansel, the knowledge has led to a different urgency\u2014to experience joy and build meaningful relationships while he still can. \u201cThere are things that I\u2019m able to enjoy in a different way, knowing that I won\u2019t always be able to enjoy them,\u201d he explains.<\/p>\n

Both brothers face unique challenges in relationships, but they\u2019ve found that their family\u2019s old approach, which they described as secrecy and shame, doesn\u2019t have to define their experience. \u201cEveryone has received this [news] in a way that is really graceful,\u201d Ansel notes.<\/p>\n

Ansel has found purpose in advocacy work through Cure MAPT FTD, a global team of families who have been affected by MAPT FTD; he\u2019s on the organization\u2019s executive team.<\/p>\n

\u201cIt has been so transformative for me,\u201d he explains. \u201cFor the first time ever, I\u2019ve met people outside my family who had the same experience.\u201d<\/p>\n

Cosmo remains more private, focusing on his artistic work and finding that being \u201creally good at things\u201d provides relief from despair.<\/p>\n

Despite their genetic inheritance, both brothers maintain relationships with their mother, finding new ways to connect through activities she still enjoys. They\u2019re learning to live with what Ansel calls \u201ca known clock\u201d while not letting that knowledge overshadow the present.<\/p>\n

As they navigate their late twenties and early thirties, Ansel and Cosmo\u2019s story illustrates that even facing near-certain loss, there\u2019s room for hope, growth, and meaningful contribution through advocacy, art, and connection.<\/p>\n

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<\/a>.<\/p>\n

If you have questions about FTD genetics, testing, or counseling, contact AFTD\u2019s HelpLine. You can reach the HelpLine at 1-866-507-7222<\/b> or info@theaftd.org<\/a><\/b>.<\/p>\n

Resources: <\/p>\n","protected":false},"excerpt":{"rendered":"In a recent interview with NPR member station WUNC, for their podcast \u201cEmbodied,\u201d brothers Ansel Dow, 31, and…\n","protected":false},"author":2,"featured_media":256503,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[3846],"tags":[267,70,16,15],"class_list":{"0":"post-256502","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-genetics","8":"tag-genetics","9":"tag-science","10":"tag-uk","11":"tag-united-kingdom"},"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@uk\/114835309780909999","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/256502","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/comments?post=256502"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/posts\/256502\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media\/256503"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/media?parent=256502"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/categories?post=256502"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/uk\/wp-json\/wp\/v2\/tags?post=256502"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}