Musings of a Marfan Mom

Everything You’ve Wanted to Know About Conference

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If you’ve somehow missed it, registration for the 31st annual Marfan Foundation Family Conference is live!

I’ve come across a variety of questions online and I thought I’d take a stab at answering some of them for you, since I’ve been around the conference block a few times.
Marfan Conference

I’ve never been. Why should I go to conference? You’ll learn more in that weekend about your or your child’s diagnosis than you will in a year on your own. You/your child can be evaluated for free at a clinic staffed by the country’s experts. You’ll get to spend time with hundreds of other people who get it. It’s invaluable! When I first went as a teen, I got a lot out of seeing adults with Marfan living well. My interactions with those adults was as important to me as my interactions with the teens my age (most of whom I’m still in touch with 16 years later).

Will my “unaffected” child get anything out of it? Mine sure does! Many sibings come to conference. The teen program has a workshop just for them. The Menininho attended the kid program last year for the first time; J is too young still to go. M had a great time making “Marfan friends,” and getting to ask questions about Marfan syndrome that maybe he wouldn’t feel comfortable asking at home. Plus, a lot of the kid program isn’t necessarily connective tissue disorder specific. For example: Saturday they’re going to spend the whole day at Legoland and the planetarium.

What about my unaffected significant other? There are workshops for them too! My husband, Mark, co-runs a workshop for spouses/partners, and there is a couples’ workshop as well. Plus, this gives them a chance to learn all about Marfan syndrome. Mark loves coming to conference every year and has made friends of his own there.

What about those of us with related disorders? There is a Loeys-Dietz syndrome track and workshops for other related disorders as well.

Is registration per person or per family? Registration is per adult. Children 18 years and under are free with a registered adult: 1 adult can bring multiple children for free, but children/teens may not register for conference or come alone.

What’s up with scholarships? Scholarships are for first time attendees from the United States. Most are partial scholarships, covering 1 adult registration and 2 nights hotel. Scholarships never cover transportation. The deadline to apply for scholarships is April 13th, and decisions will be made around April 17th.

If I’ve applied for a scholarship, should I go ahead and register for conference, clinic, and a hotel? You may register for clinic, but do not register for conference or reserve a hotel room until you’ve heard back about the scholarship.

What if we receive a scholarship and end up not being able to attend? The scholarship goes back into the scholarship fund and you could re-apply for a scholarship another year.

Can I attend the kid program with my child? Who is taking care of the kids, anyway? Family members do not attend the kid (or teen) programs with their children. However, there are really fantastic chaperones! These include medical professionals, Foundation staff, and (background checked) volunteers. Some of the kid program coordinators have been running it for years and volunteers are either affected themselves, or have a loved one who is. The children’s program schedule is online too. The children’s program is for ages 5-12. Do contact Diane M. at the Marfan Foundation with any questions or concerns that you have!

My child has special needs (a wheelchair, food allergies, another diagnosis, etc.) Please let Diane M. at the Foundation know ahead of time. The earlier she knows, the better accommodations can be handled.

What do the teens do? A full schedule is available on the conference website, but we’ve got workshops (they address both medical and social issues), a field trip, a dance, and plenty of time to get to know each other planned. The teen program is for ages 13-18.

What about the young adults? The young adults program is for ages 19-25. They have their own workshop track and social activities, as well as the option of attending any of the adult programs that they would like to. You can find their schedule here.

Can my child attend a program outside of their age group? No. The programs have strict age-cutoffs, but be assured: the programs are designed to meet the needs of the variety of ages of participants.

What about evening activities? The teens and young adults have activities till late at night. For adults and kids, there are hospitality suites at the hotel to facilitate meeting new people. Evenings are also a great time to check out things local to Chicago: I suggest the pizza!

Which hotel should I stay at? It’s up to you! Both are close to the hospital where the adult workshops will be held. They’re also within walking distance from each other. The teen program activities will be split between the two hotels.

How does clinic work and when will we hear back about it? There are two days to the free clinic. The first day has echoes and eye exams. The second day has appointments with a variety of specialists: cardio, ortho, genetics, pulmonary…sometimes GI and other specialities (I do not know if GI or anyone else will be at clinic this year). You must register for the clinic by May 15th. You should consider sending pertinent medical records with your application so that the doctors can review them ahead of time. Priority is given to patients without access to knowledgeable medical care. You may not receive your clinic appointments until shortly before the conference, so assume that you have an 8 am appointment on the first day you’re attending clinic (whether that be Thursday or Friday) when planning travel arrangements.

What about Foundation members who only speak Spanish? We have a Spanish language track at the conference. I’ll update here once I know about Spanish language interpreters for the clinic.

Conference isn’t near me this year. Does it change location? Yes. Conference moves around the country every year. Where conference can be held depends in part on clinic availability.

What questions have I missed? Ask in the comments!

Marfan conference teens

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One Comment

  1. For me, the best part about the conference is being with other folks with Marfan’s. Before my first conference, I had never talked to or even seen a picture of someone else with it. (Other than Abraham Lincoln, and he doesn’t really count.) So, imagine suddenly walking into a room filled with folks just like me! Last year, I met a young woman attending her first conference. She told me that Marfan had always made her feel alone. Now it was like she had a whole new family!

    For newly diagnosed folks getting to see all the relevant experts is invaluable. It can be a life changing or perhaps even life saving event! For me, and for those of us who go almost every year, feeling like you have reunited with a group of long lost friends is the best reason to go!


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