Sunday, July 25, 2010

Downloading from the Fragile X Conference

It was a week full of
Thrills (seeing Dr. Berry Kravis and the Hagermans),
Chills (overly air-conditioned hotel conference rooms),
Sights (The Henry Ford Museum),
Friends (met lots of them!),
Rain (every day, is Detroit pretending to be Seattle?),
Giggles,(the video of the FMR1 mouse trying to run on the spinning rod),
Education, and News!

It was intense and enriching.

We started by sliding in to the Hyatt Regency Dearborn just in time Wednesday night to hit registration and the last 45 minutes of the welcome reception.  On Thursday morning the education began with a session by the renowned and beloved Dr. Elizabeth Berry-Kravis, a professor of Pediatrics, Neurology, and Biochemistry, on new medications being targeted and tested for Fragile X patients.  If you haven't heard Dr. Berry-Kravis speak before, here's how it goes:  she takes a breath, talks for 30 minutes about concepts your brain struggles to grasp, and then stops and takes a breath.  You don't blink the entire time but you come away enlightened.

I attended sessions on:
  • Understanding and Treating Behavioral Issues
  • What Does the Future Hold for my Child with Fragile X?
  • Talking with Students about Fragile X Syndrome
  • Panel:  Participation in Clinical Trials of Experimental Medications
  • Panel:  The National Fragile X Foundation LINKS Network
  • Toilet Training Your Child
  • Raising Fragile X Children:  Your Guide to Thriving, not just Surviving
to name a few.

I participated in a survey the University of Philadelphia was doing on caregivers of children with Fragile X, for which I have a chance of winning an Ipad.  I registered the boys and myself with the Fragile X Syndrome Clinic & Research Consortium.  If research studies come up for which we'd be a good fit, they will contact us.

I spent a lot of quality time with Zack & AJ's developmental specialist/nurse practitioner Janet Mims, who told someone that she'd come to the conference because I'd sounded so excited about it and she didn't want me to know more about Fragile X than she did.  We had a lot of fun and she is now absolutely one of my favorite people!

I met everyone here from Minnesota, and Brenda, a Facebook friend from Iowa.  I met Mary Beth, a Michigan friend, and Holly, an Illinois friend.  At the welcome desk they had a big posterboard map of the US where you could put post-it messages up to conference attendees, sticking the post-it on whatever part of the country they were from.

On Friday Mark fulfilled a lifelong dream (I don't really know that, but it sounded so dramatic, didn't it?) to visit the University of Michigan campus at Ann Arbor.  He began by checking out the Evans House;

and then the law library

and then nearly got himself kicked out for using a flash taking pictures in the art museum.

On Saturday we visited The Henry Ford Museum, just down the street from the Hyatt.  I'm not much of a car enthusiast though I tried to show the proper respect.  We are, after all, in the Motor City!

However, the history section of the museum did peak my interest.  We showed reverence for the car John F Kennedy was shot and killed in.

And I was surprised we were allowed right on the bus that Rosa Parks made famous by standing her ground.  This is the seat she refused to move from.

The furniture was nice, but to me, there is a fine line between antiques of museum quality, and garage sale crap.  Maybe this means I should pay more attention to old looking furniture at garage sales.

Is it an ancient baby swing, or some sort of torture device?  Picture a baby in there.  Crying.

and I was more than a little disturbed to discover toys I played with as a child are now ancient and fascinating enough to be in a museum.  Speak and Spell and Simon?  I think I still have one of those somewhere!  And that little handheld football game was awesome!

Maybe I should see if they want my old Macintosh from 1993.

Finally it was time for the banquet.  The banquet and auction is the traditional end of every conference.

And now it's time to get on a plane and go home to see my babies!  More tomorrow about actual things I learned.  And maybe, more photos...


Kim and Steve said...

I'm so glad you and Mark got away together - even better that you learned some things that will make your life better. And wow! I think you've seen more of my home state than I have! How fun!

Kim and Steve said...

And thanks for the name suggestions. They're some of my favorites so far!


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