A rare disease took my father’s future. I won’t let the FDA take mine

Published June 19, 2026 8:00am ET



When I was a little girl, my father was my hero. I remember jumping into his arms when he came home from work, him tickling me as I burst into laughter, or curling up next to him on the couch. I loved him so much, and I knew he loved me.

I don’t remember the exact moment I realized I was losing the father I knew and loved. Over time, he changed, slowly, because before his earthly life was over, he was taken from me by a terrible disease that is now part of my future as well.

Father’s Day is approaching. Like many daughters, I’ve been looking through old family photos. In every picture, my father is smiling back at me. I also see two dads: the one I knew when I was young, and the person Huntington’s disease destroyed.

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