Here’s the slideshow that I spent so much time creating. Mark added the finishing touches, like synching everything perfectly 🙂
July 21, 2010
by marfmom
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July 20, 2010
by marfmom
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Conference 2010, Part 2
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.
July 19, 2010
by marfmom
2 Comments
Conference 2010, Part 1
If you’ve followed me on Facebook or Twitter, you know I had an amazing time at the National Marfan Foundation conference.
We flew in on Wednesday afternoon because I wanted to maximize my time with everyone. I’d been planning a dinner for 35 of my closest friends for the past couple of months, to be held a couple of hours after our plan landed. Wouldn’t you know that once we hit our layover in Denver, the flight attendants told us there was a strong possibility of our flight being diverted to Dallas due to the storms in Houston? I said “Um, I don’t think so. I have spent too long planning this dinner; I HAVE to be there!” And wouldn’t you know? The weather listened to me and we made it into Houston right on time!
Granted, a huge storm had just hit, the aftereffects of which left us all very wet. But, the dinner went off well and I loved seeing everyone. A casual bystander wouldn’t have realized that it had been a year since we’d seen each other, and that some of the group members had never met any of us, so easy did we fall into conversation. I got to meet one of my girlfriends in person for the first time! We’ve been emailing and chatting on the phone for almost two years and I was so glad she and her husband could join us.
Back at the hotel, a couple of parents had purchased adjoining rooms for their kids, so they could have space to talk into all hours of the night without disturbing the adults (and believe me: the teens had a mission to get NO sleep the entire weekend). We had a surprise birthday party for one of the boys and Menininho had a great time. He very carefully moved everyone’s shoes from one end of the room to the other and back again. And again. And again. Hotel security was only called twice to tell the kids to settle down. I went to bed early, about 1 am, because I knew I’d need sleep to get through the next 4 days.
Stay tuned for the next segment in the recap tomorrow!