Not long after getting the diagnosis of Fragile X Syndrome, we learned about the MIND Institute at the University of California in Davis. It's where the greatest medical, scientific, and research minds all come together to work constantly and tirelessly on better treatments, earlier diagnoses, and ultimately a cure for all the Fragile X disorders.
It's where the Hagermanns live and work. They are a husband and wife team who've dedicated their lives, professional and personal, to researching Fragile X and making the lives of our kids better.
The Hagermanns are major celebrities in our world. They are featured prominently at every conference. Mark and I saw them at Subway, across the street from the hotel where the last conference was in Detroit, and I was too intimidated to approach them. I mean, they were trying to have a lunch break. They didn't need to be accosted by fans.
So anyway, when I found out that the head researcher in charge of the study that AJ and I took part in last year at the Waisman Center was moving to the MIND Institute, I was actually less than thrilled. It's a lot harder to bring AJ to California than it was to Wisconsin.
I'm getting excited, though. I mean, the MIND is such a famous and revered place in the Fragile X world. It's our Mecca. It's the Fragile X holy land. And I finally get to see it.
AJ is not that excited. He's, predictably, nervous. He and I had a conversation this morning that went like this:
Me: AJ, you and I are going to go to the airport today, and go on an airplane!
Me: Yes, we are! We're going to fly through the sky on an airplane and go to California!
Me: And then, we're going to stay at a hotel!
Me: And tomorrow, we'll go over to the school and play and work with the ladies there!
Me: Yes, and after that? We're going to go back to the hotel and go swimming!
So he's good with the hotel and the swimming, but nothing else.
He'll be stressed, but he'll be okay. I just hope and pray that the flight isn't delayed, and actually is miraculously shorter than it's supposed to be. Because 4 hours on an airplane is a really long time to ask AJ to be good.....
Word of the Week 21/5/2023 Full Diary #WotW
1 week ago
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