Musings of a Marfan Mom

Marfan Conference Recap

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This year’s conference was amazing! It’s hard to sum up the emotions that go along with it, though Heather of The Giraffe Family did a good job of it!

I was particularly excited about the 2012 conference for a couple of reasons. First, because Chicago is where my siblings live, my brother would be able to run the unaffected sibling/friend workshop for the teens. And second, all of my Marfan Mom Facebook friends would be in attendance. Last minute three of them had to cancel though, including Sarah (she is saving the money we raised to bring Danny next year though; last minute health issues kept him home this year), which stunk, but I was still excited to see the rest of our crew.

My brother Matt & me


Mark, the boys, and I got to town Tuesday to maximize my time with everyone. Conference is the highlight of my year. It recharges me for the other 51 weeks. It is the time I feel fully whole because everyone gets it in a way that you can’t unless you’re living it.

Wednesday Baby J and I went to the aquarium with Jess & Brody. It was the first time we’ve met in person, even though we’ve been chatting daily on Facebook for over a year and a half. Brody was adorable! J, on the other hand, slept most of the time. While we were there, Mark took the Menininho to go find as many water fountains in the city as possible. They had a blast.

Thursday night we had a little party for the Marf Babies (well, kids 6 and under) and their families. I cannot wrap my mind about how amazing it is that we were all together (we called Sarah on the phone & Skyped with Samantha, so they could both “be” with us). Baby J is so lucky to have this opportunity to grow up knowing other kids his age with Marfan. He will never experience what so many of us older Marfs have: a feeling of being utterly alone in the world because we knew no one else like us.

Friday J woke up with a bad cough. Turns out Chicago was under an air advisory and therefore the past couple of months of “is-it-asthma-or-is-it-allergies” became “it’s asthma” fairly definitively. I called our pulmonary nurse back home and she called in a Rx for an inhaler, which helped some. By then my mom was in town to watch the boys and she kept them back at the hotel most of the weekend to keep J’s exposure to the air at a minimum.

After a day of board meetings, it was time for the teen program to start! This year we had a record breaking 107 teens registered, ages 13-18. Amazing! Actually, all of conference broke records, with almost 900 families and medical professionals in attendance and over 120 people registered for the free clinic. The Northern Illinois chapter of the NMF did a fantastic job planning the conference. Friday’s welcome event was at Navy Pier and the building was beautiful. I helped present an award to WebMD and the National Health Council, which was fun.

Me, Ben, and his wife Lindsey on Friday


As always, the teens this year were phenomenal. Parents, you should be proud of your kids. We had great discussions, they helped each other, and participated in the activities we planned. Saturday we took them on a murder mystery train tour to Milwaukee and back, via Amtrak. It was excellent and the teens had a lot of fun. Each of us got a character to play, chaperones included. Then that night, we had a dance. I got teary when they all belted out “Born This Way;” the lyrics have always resonated with me as being particularly fitting for Marfs and I hope every one of those teens internalizes the message that they are fabulous and born to be brave.

The teen council also put together a tribute to Ben, my partner in leading the teen program, who stepped down after this year. You can view it here. I’m really going to miss working with him, but I know he’ll still be around in some way or another…he can’t get rid of us that easily!

Sunday were the workshops and closing luncheon. I taught a workshop on preparing for college. Later this week I’ll post my notes from that workshop for those who might be interested. Also, if you search the hashtag #nmfconf on Twitter, you should still be able to see the live tweets and photos I tweeted during my time in Chicago.

I can’t wait to start planning for next year’s conference, in Los Angeles (Aug. 1-4)!

If you attended conference this year, what were your thoughts? Favorite moments? Constructive feedback?

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