Musings of a Marfan Mom

Conference Information


Those affected by Marfan or a related disorder should know that it’s THAT time of year again: conference registration!!! Since the deadline to apply for scholarship is Mon. April 12th, I thought I’d take a moment to talk about why I think conference is so important.

First of all, there’s a free clinic. This clinic is staffed by some of the best connective tissue disorder specialists in the world. So, if you’re looking for a diagnosis, or you want a second opinion on something because you don’t have access to a specialist normally, there isn’t a better place to go.

Second, the workshops are phenomenal. There are research updates about the latest drug trials for everyone and smaller classes on a variety of subjects, from cardiac surgery to Loeys-Dietz syndrome to the difference between IEPs and 504s. Saturday workshops are medical in nature and taught by experts in the field; Sunday workshops are more psychosocial and taught by NMF personnel and expert volunteers.

Third, the children and teen programs are well developed. I can’t speak as much for the kid program as I don’t work with them, but I know with the teens, we strive to create an atmosphere where they can just BE for the weekend. All activities are geared towards the most severely affected member being able to participate. There are opportunities to learn medical information in ways that they can understand, discuss their feelings about having a connective tissue disorder (or being related to someone who does), have a weekend to feel “normal” (whatever “normal” means), and build lifelong friendships.

Fourth, conference gives you the chance to mingle with other people like you. For many people, it’s the first time in their lives that they’ve met someone else like them, who really GETS it. It’s amazing.

This year’s conference is in Houston, TX, July 8-11th. The location moves every year, around the United States (next year is in Portland, OR, then Chicago, IL in 2012). The first day and a half is just for clinic patients; conference itself kicks off Friday late afternoon.

Here are the important links to:
Find general conference info
Register for conference
Apply for scholarship (deadline April 12th!)
Register for the free clinic (you must also register for conference)
View the children’s program schedule (ages 5-12)
View the teen program schedule (ages 13-19)

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  1. Hi Maya,
    Do you know who I would contact in regards to the childrens’ program? I am seriously considering taking my daughter to the conference, but I have a few questions.
    Jen from Boston


    marfmom Reply:

    Jennifer Buffone is the woman to contact, at the NMF, and her email is jbuffone at marfan dot org. Hope you can all come! :-)


  2. I applied for the scholarship as soon as it was posted……crossing my fingers over here.

    It would be so nice to actually meet someone who I dont have to define every word to, you know!? OF COURSE you know!!!! :)

    We will see what happens.


    marfmom Reply:

    Oh my fingers are crossed for you, too! If you come to conference let me know; we’ll meet up! :-)


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