The International Rett Syndrome Foundation conference, then and now
In 2002, a party on a cruise ship. This year, serious work.
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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 write this. It’s unlikely I’ll have as much fun or gain as much weight this year as I did the last time I attended, but I suspect my brain will have absorbed 10 pounds’ worth of new information.
As near as my wife, Donna, and I can calculate — memories grow a bit hazy — the conference I attended previously was in 2002. It was put on by the International Rett Syndrome Association, a group that has since morphed into the International Rett Syndrome Foundation (IRSF), organizer of the current conference, and it was held on a cruise ship that sailed to the Bahamas and back. Memo to the IRSF: Bring back the convention cruise! It was a hoot.
We made a family event of it. Donna, Abby, and I went, and we also brought Abby’s older sister and a friend of hers, as well as Abby’s one-on-one aide, Shannon. There was quite a lot of eating; thus, the 10 pounds.
And there were some memorable recreational activities. Abby’s sister and I went parasailing, towed high in the air behind a speedboat. I wanted to take Abby up — she was 5 at the time — but her mother inexplicably forbade it.
Abby did get in plenty of earthbound fun. We cherish a video — shot on an old-school VHS camera and since digitized — of her and Shannon carousing in the ocean, which was bathwater-warm. A photo we shot of Abby and two other Rett girls about her age lounging in a hammock is in our Top 5 Abby photos of all time. I was delighted, an hour ago, to run into one of those girls and her mother here at the 2026 conference, which is being held in Minnesota. I only wish Donna and Abby could have made the trip with me from New Jersey, but that’s more than we could have managed at our age and with Abby’s needs.
You’ll notice that my memories of that 2002 conference all involve food and recreation, not talks or panels on scientific developments. There probably were a few, since the gene associated with most Rett syndrome cases, MECP2, had just been identified a few years earlier. But fun and socialization were the main orders of business.
A sharp contrast
At the 2026 conference, which will be winding down by the time this column posts, it’s a different story. The agenda is heavy on scientific advances and treatment options, and in one conference room, more than 60 posters are on display describing research studies that have been done or are in progress at universities and biotech companies. The room should have had a cautionary sign out front — Warning: Daunting scientific verbiage inside.
Part of the poster display at the 2026 Rett syndrome conference. (Photo by Neil Genzlinger)
“Astrocytic Regulation of aberrant perineuronal net formation in Mecp2 –null Neocortex,” one poster was titled. “Mechanistic Insights into the Effect of Rett Syndrome Mutations on MECP2’s Engagement with Chromatin,” read another. And my favorite: “Investigating FAN1 as a Genetic Modifier of Rett Syndrome in Human Stem Cell-Derived Neural Precursor Cells and Dorsal Forebrain Organoids.”
My dorsal forebrain was spinning just reading these things, or trying to. But the coolest part of the display was that, on the conference’s opening evening, some of the researchers who did these studies and experiments stood next to their respective posters and eagerly explained the work to any mere mortals like me who strolled by. Some of the studies were going for a cure, some sought to alleviate symptoms; a few even focused on caregivers.
It was heartening to see so many smart people working on Abby’s disability. And it made for a sharp contrast with the last conference I went to. That good time on a cruise ship back in 2002 now seems like a sort of last grand party before Rett syndrome really started to take its toll on Abby, and before serious work began on slaying the monster.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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