An Excess of Lemons – a Column by Neil Genzlinger

First in a series. These days in our household, we refer to August 2009 as “the worst summer vacation ever.” It’s a grim sort of joke. There was no vacation that August. There was an operation that was supposed to keep our daughter, Abby, who has Rett syndrome, in…

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…

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…

“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…

Spring fundraising appeals for Rett syndrome causes have been turning up in the inbox and the Facebook feed, as they do every year at this time. Girl Power 2 Cure, a worthy organization, says there’s still time for us to “give a dollar a day in May.” The…