Last October, I wrote about a potential gene therapy for Huntington’s disease, an illness my family is very familiar with, as my wife, Jill, and daughter, Alexus, are both gene-positive. The experimental treatment is called AMT-130. According to uniQure, the therapy’s developer, top-line data from…
A Family Tradition - a Column by Carlos Briceño
Several years ago, at a family reunion, I discovered something remarkable about my wife Jill’s approach to difficult conversations that has stayed with me ever since. This discovery has become even more important as Jill deals with the challenges of being gene-positive with Huntington’s disease (HD). At the reunion, Jill…
If there’s one thing Huntington’s disease (HD) has taught me and my wife, Jill, who is gene-positive with the illness, it’s that rest isn’t a reward; it’s a necessity. Between the disease’s relentless advancement, the daily logistics of symptom management, and the invisible emotional toll, we sometimes forget that…
For years before her 2018 diagnosis with Huntington’s disease (HD), my wife, Jill, worked with children at a school. One of her fondest memories is of seeing shy children find their voice thanks to a teacher’s encouragement. “All they needed,” she said, “was for someone to say to them,…
When a building catches fire, most of us instinctively move back. We watch from the sidewalk, hoping the flames die down, grateful for any distance between us and the danger. Firefighters are different. They hear the alarm, size up the risk, and move toward the heat, knowing there are no…
Every year, I write my wife, Jill, something romantic in this column, such as a Valentine’s Day play. This year, she looked at me, half amused and half worried, and said, “Carlos, I don’t know how you haven’t run out of puns by now.”…
Breaking news: We have a new dog. He’s a puppy. His name is Dexter, and he’s perfect. He’s perfect at eating little things that have accumulated on the floor of our home, such as dust balls, little scraps of paper, and tiny pieces of food. He’s perfect at walking so…
Before her Huntington’s disease (HD) diagnosis, my wife, Jill, worked with children between the ages of 5 and 15. Every afternoon, when she came home, she carried stories about the little dramas that had unfolded at school that day. There was always something — a Lego taken without permission, an argument…
Hope recently arrived at our house disguised as a press release. Years ago, my wife, Jill, who is gene-positive with Huntington’s disease (HD), tried to explain what it feels like to live with the emotional ups and downs of a rare disease. She said there are days when news…
When my wife, Jill, recently offered to help me with work, my first instinct was to say no. As a communications director with no staff, I’m used to doing everything myself. However, there’s a price to pay, as a typical workweek is usually about 55 hours and filled with meetings…