Musings of a Marfan Mom

April 5, 2010
by marfmom
4 Comments

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)

April 2, 2010
by marfmom
2 Comments

Friday Favorites

First of all, I just want to make sure that everyone knows the post by Dumb Mom was an April Fool’s joke, since I got a question or two about that. For better or for worse, this is still very much MY blog. ☺)

I’m featuring three bloggers this week.

Catherine and Loralee are friends. I’m presenting them together because this week, they did a joint post about beauty and the importance of telling other people they are beautiful. The two women were at a conference, Loralee spoke about feeling less than beautiful, Catherine could relate and poof! the idea was born. Catherine’s post, Some Shape of Beauty, talks about Loralee’s beauty and Loralee’s post, You’re Beautiful to Me, discusses Catherine’s. Both women are encouraging other bloggers to follow suit. If you want to blog about beauty (your friend’s, a stranger’s, your own, whatever), you can link up your post at Catherine’s blog, Her Bad Mother. I love both of these bloggers and you should carve out some time to read more of their posts, but I wanted to highlight them today because I think this beauty meme is such a great idea!

Kayce is a blogger I think I found through a #followfriday on Twitter. She’s mom to one, doula, and aspiring midwife. Kayce is a wealth of birth-related information and so sweet; her passion for birth is palpalble. Kayce was recently published in Midwifery Today and it’s that article, What I Wish I Had Seen, that I’m featuring today. She writes about her thoughts of birth and the experiences that helped shape her into a birthing advocate, specifically a homebirthing advocate. I’m not a candidate for homebirth myself but I love the idea and if anyone is interested in the subject, Kayce is a great person to talk with!