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At the International Rett Syndrome Foundation’s conference earlier this month in Minnesota, there was a “Caregiver Retreat Center,” a quiet room away from the main conference activities where parents and other caregivers could go to chill. The conference sessions were information-heavy and sometimes emotional, and this side room offered a…

It was, if I do say so myself, a brilliant idea, though it didn’t turn out quite the way I had envisioned it.  As I was preparing to attend the International Rett Syndrome Foundation conference held earlier this month in Minnesota, I noticed that among the agenda items…

At the International Rett Syndrome Foundation’s (IRSF) conference earlier this month in Minnesota, which I attended, there was quite a lot of talk in the scientific presentations about gene replacement, gene activation, gene silencing, and such. Also at the conference, there were quite a few young kids with Rett…

The last time I went to the national conference devoted to Rett syndrome, my daughter Abby’s disability, I brought a bathing suit and a beach towel and finished the conference 10 pounds heavier than I had started it. I’m on Day 1 of the 2026 conference as I…

My daughter Abby, who has Rett syndrome, won’t sit through a lot of movies, but one she has watched a zillion times is “Harry Potter and the Sorcerer’s Stone,” the first Harry Potter film, which came out in 2001, when Abby was 4. My wife and I think she…

My husband, Billy, loves to golf. After working hard all week, there is nothing he enjoys more than spending a few hours on the golf course. These days, I don’t mind how much time he spends golfing. In fact, I encourage it. But it wasn’t always that way. When our…

There aren’t many doctors who specialize in Rett syndrome, my daughter Abby’s disability, and so earlier this year when we got word that Dr. Sasha was retiring, it was quite a blow to our household. Not only had she long been a steady hand in Abby’s caregiving circle, but…

The Trenton Thunder’s baseball season opened the other day, though only a hardcore few noticed. Like most households in New Jersey, ours is fairly indifferent to the Thunder. And yet before the summer is over we will make several trips to see the team play, because watching a baseball game…

In 2009, my husband and I were living in a third-floor condo in Chicago. My brother and his wife lived just 2 miles away. Within eight days of each other, we both welcomed beautiful baby girls into the world. It felt like a dream come true. Our daughters would grow…

“Potentially.” “Promising.” “Could.” “Might.” “Possibility.” These are some of my least favorite words. Why? Because they and an assortment of others turn up routinely in practically every press release about some incremental advance in Rett syndrome research. “This study raises the possibility that …” goes one. “The findings…