I got wonderful news today! The National Marfan Foundation called me this afternoon and asked me to speak in front of EVERYONE (300-500 people) at conference! The last event at conference is the 4 person “Living Successfully” panel, comprised of people with Marfan or a related disorder who the NMF thinks are a great example of living well with their genetic disorder. It’s a really big honor and I am so excited! I’ll be speaking for 5 minutes and then, if time allows, answering questions from the audience. I also found out that one of the teens I’ve become very close with, Laurel, is another one of the panel members. She’s fabulous…done thousands of dollars worth of fundraising, started a Have a Heart Day at her high school, created a PSA on Marfan for her choir concert when they sang a song from RENT (Jonathan Larsen, the creator, died of an aortic dissection), and worked with her mom to start a local network group for Marfs in Louisiana. So, I’m excited to get to experience this along with Laurel. Even more special is the fact that my mother is going to be at conference as well. She hasn’t been to a conference since my first one ten years ago. I’m amazed and humbled at all the changes that have happened in my life Marfan-wise since then.
As I get ready for this year’s conference, I’m going to do a series of entries about how I’ve come to be involved with the NMF. They’re memories I definitely want to preserve for Menininho and it will help me pass the time until Rochester. Conference is the closest thing I have to a family reunion and I can. not. wait. to see my Marfamily again!!!