Musings of a Marfan Mom

Conference 2010, Part 2

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To read about the first part of conference, click here.

I was glad that we had Thursday to relax a bit. Mark, the Menininho, and I spent the day exploring and catching up with friends. That evening I had my first event as a new member of the National Marfan Foundation’s board of directors: the Professional Advisory Board reception. There, my cardiologist approached me to ask if he could participate in the teen program because it was obvious we all have so much fun. I repeat: he’s awesome. How many doctors would ASK to spend time with 94 teenagers?

Friday I had an 8 am introduction to the board of directors meeting. I had to cut it short to shuttle over to the hospital for an interview. The local news station was covering the story of a teen from Texas who had never met another Marf before. They wanted to capture on camera her meeting other teens for the first time, and as one of the teen coordinators, the NMF wanted me to come along. It sounds like it could have been awkward, but it actually went really well and the clip is available for viewing here.

From there I was back into board meetings until the teen program started at 4:30. The energy in that room was palpable. I know I say it a lot, but it’s an honor to be able to work with these teens. They were up for whatever Ben and I threw at them, always polite, and treated each other with nothing but love and respect.

The welcome reception featured great chicken fingers, enchiladas, and CHURROS! Yes, the menu is worth mentioning b/c by 5:30 that’s all I was thinking about. In My Hands was shown after that and if you haven’t purchased the DVD yet, hurry up and do it!

Friday night is my favorite part of the teen program. We spend the first hour with a panel of adults, some in their early 20s, some much more seasoned, talking about their lives with Marfan and how they’ve chosen to live well. It’s always a good discussion. Then the guys split off into another room and we have an hour and a half to talk about anything and everything. It’s a sacred time: everything said in the room stays in the room and it’s an amazing bonding time.

But while Friday night was perhaps my favorite part, Saturday was the most adventurous…

This has nothing to do with the teen program, I just thought my kid looked super cute here.

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One Comment

  1. I’m really enjoying hearing about all the amazing things you are doing for those teens! OH, and yes, he does look VERY cute in that picture!


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