Wednesday, July 16, 2014

International Fragile X Conference, Day 2

This morning the first thing I did was hit Starbucks for my morning pick-me-up.  Me, and dozens of others, but Starbucks is used to their caffeine addicted customers and they handled the crowd just fine.  After a few minutes in line I noticed that Randi Hagermann was just a few people behind me.  I began to sweat.

I knew I might see famous people here in LA, and here she was, my first celebrity sighting!

I'd heard her speak a dozen times but never actually approached her and talked to her.  So after ordering my caramel Frappaciccno, I found myself and Randi together at the counter, waiting for our beverages, and I took it as a sign.  This was my moment.

I introduced myself, and told her about my boys, and thanked her for her dedication to the Feagile X community.

And I spent some time later thinking, you know, she and her husband are Fragile X research rock stars, and we all openly worship the Hagermanns.  Look at the pressure we put on them.  I imagine it must be hard, being them. They couldn't retire if they wanted too, not with all of us counting on them.

I hope they don't want to.

Anyway, after getting coffee in hand it was time to get over to the Community Support Network leader meetings. I'm transitioning the leadership role to my good friends Miranda and Zach, so today we were all there, but going forward, they will be in charge.  I will probably remain in the role of parent contact, though.

The meetings were fun, as they always are.  It's such a terrific group of people and we were all energized and so happy to be there, Holly had a hard time shushing us so the meeting could start.

We learned tips and techniques for being good group leaders, and met the board of directors.  I really enjoyed that part, it was nice to get up close and personal with them.  Most of them are parents of kids with Fragile X, just like us.  It's so inspiring to be in a room full of such devoted, passionate people, all of us working toward the same goal.

Afterward there was a meeting to discuss how to best define the parameters of a study that is to be done on anxiety meds in children with Fragile X, and how effective they are.  This was a fairly high level meeting but having just participated in a drug trial, I wanted in on the conversation.  There are so many forms to fill out on a regular basis when you take part in a study, and all the parameters are so generalized, it can be hard to decide just how to answer them in reference to your own child.  It's hard to take statements like "enjoys being around children his/her own age" and decide whether or not enough improvement has occurred since the last time you filled out this form for you to be able to choose "often" rather than "sometimes."  

If the responses could be more personal it would be easier for parents to track.  One parent had claimed she knew the medication being tested was working because her son no longer had daily tantrums after getting off the bus.  Unfortunately that specific parameter meant nothing, in terms of the study.

A few people (probably the ones most attached to their smartphones) thought it would be great for their to be an app created where we could record changes and occurrences that show us that changes are happening in our children in real time, as they occur and as we see them.  I do like this idea, as opposed to the every-three-months filling out the same form, thinking back about small changes in our children that might allow us to fill out the form differently than the last time.  But I see, too, how difficult it would be to make the responses we might put into a real-time app into definable, useable data.

Evidently all the clinics will have the opportunity to participate in a new study called PCORI, which stands for - I forget, but it will study the effects of anxiety medications that our kids are already on, which will be infinitely easier than changing meds.  Someone mentioned this was a good trial for clinics that hadn't participated in any studies yet, and I made note of that, because I'd love the Minnesota clinic to start getting involved in studies and trials.  As much as we like to see Dr. Berry-Kravis, we don't like the 8 hour drive to get to the clinic in Chicago.  Yes, I know it's only 6 hours from the Twin Cities to Chicago, but we've never made it there with the kids in less than 8.

After that meeting there was a short break and then we went right into the kickoff celebration, to start the conference!  It was the first time all of us attendees were in the same room, and it was invigorating. Jeff Cohen made an exciting announcement, that Katie Couric had interviewed a couple of board members and Randi Hagermann for an upcoming special that from what I understand will be available for viewing online somehow.  He said this was the biggest and most broad audience Fragile X has ever had, which is exciting, but I wish it was going to be the subject of her talk show, and actually be on TV. Still, I am excited to see it and share it.

Our talented Miranda made our great state of Minnesota out of torn up cardboard.  Very artistic!

One of the best things about today was that I was too busy to miss the kids, which is silly since I spent the last week looking forward to this time, when I don't have to worry about whether AJ has been to the potty lately or if it's time for the next dose of medications or if they've stripped down and are running through the house naked, wanting to get in the pool, or if AJ has run out the front door to follow Aliza anywhere and everywhere.  I guess I don't miss all those little things, but I still miss them.   This morning Marka drives though, so I'll have some of my family with me.

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