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…
An Excess of Lemons – a Column by Neil Genzlinger
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…
I’ve been taking a lot of flak for letting someone drape a giant snake around my daughter Abby a few weeks ago. And I’ll admit that, as part of my ongoing search for a therapeutic breakthrough for Abby, who has Rett syndrome, the experiment was a failure. The goat…
Twenty-four years ago this week, my daughter Abby sat 5 feet from one of the world’s most famous movie stars in a hearing room in Washington, D.C., as print and television journalists recorded the biggest media circus ever staged on behalf of Abby’s disability, Rett syndrome. The movie star…
Practically every parent of a child with a visible disability has a story about the time someone looked crossways at the kid in the grocery store or made a thoughtless or downright hateful comment. This story is the opposite of those. My wife, Donna, and I don’t take many…
Recent Posts
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- The International Rett Syndrome Foundation conference, then and now
- EU panel backs Daybu to treat Rett syndrome behavioral issues
- The day my daughter with Rett syndrome became invisible
- Finding the space to breathe after years of Rett syndrome caregiving
- All Rett patients in trial achieve motor milestones with gene therapy
- A doctor’s retirement, and those stairs we climbed for Rett syndrome
- Embolden gene therapy trial finishes dosing ahead of schedule
- Rett syndrome makes my kid a different sort of baseball fan