Musings of a Marfan Mom

It’s That Time of Year Again…


…..time to register for the National Marfan Foundation’s annual conference!

Long time readers know this is one of my favorite parts of the year. To me, conference is a family reunion and Mark agrees, even as a relatively new member of the “Marfamily.” The value of being surrounded by people who look like you is invaluable (especially for teens!), not to mention the comfort it can provide for “unaffected” parents and siblings to meet those going through similar experiences.

I am really excited for Baby J to get to come this year. The fact that he will be attending his first conference at 8 months of age, that he will literally never know a time when he wasn’t around other “Marfs,” is amazing to me. It makes me even more optimistic for his future, knowing that he has this incredible extended family to support him as he learns to navigate what it means to have Marfan syndrome.

If you or a loved one has Marfan syndrome, Loeys-Dietz syndrome, Ehlers-Danlos syndrome, another related disorder, or is looking for a diagnosis, please consider coming! There is a free clinic, children and teen programs, and workshops taught by some of the world’s experts. Plus, kids and teens are free!

This year’s conference will be held in Portland, OR, July 14-17th. The 14th is an echo and eye exam day (for those who register ahead of time). The 15th is clinic appointments with various medical specialties (cardio, ortho, genetics, etc.), again for those who have pre-registered for them, and the conference officially kicks off that evening.

Here are some quick links for information:

Apply for a scholarship (deadline is April 11th)

Register for the conference clinic (deadline is May 20th)

Check out the children’s program

Teens’ program schedule (which I co-run, so it’s going to be AWESOME)

Check out the brand new young adult program

Adult program schedule


For a more in-depth look of what conference is like, check out the conference tab here and the slideshow one of the teens made of last year’s conference.

We’ll be getting into town early and staying late; hope to see you there!

Leave me a comment if I’m going to see you! And if not, what is something you’re looking forward to this summer?

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  1. We’re not a Marfan (or other physical disorder) family, but I’m sooo looking forward to spending time with you and Arwyn! And the babies/toddlers..


    marfmom Reply:

    It’s going to be great!


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