May 17, 2013
by marfmom


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Friday Favorites

It’s Friday, which means it’s Friday Favorites time! Come on over and link up a favorite post that you wrote this week! Amy and/or I will come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too.



Friday Favorites with Musings of a Marfan Mom & Anktangle

May 15, 2013
by marfmom


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Sleep Study #5

Watching FInding Nemo and snacking while waiting to begin


Watching himself on the phone camera helped calm him.


That didn’t work for long.


All hooked up


Ready to go!

It was a long night to say the least. Results in a few weeks.

May 14, 2013
by marfmom


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Team Victory

Like to run? Don’t like to run, but could be compelled to run? Or perhaps you like to walk or ride? Well then, this post is for you!

The National Marfan Foundation has a new endurance program to raise money for the cause: Team Victory. Participants can “run, walk, and ride to raise funds in honor of individuals and families that are affected by Marfan syndrome and related disorders.” The NMF has purchased spots in a variety of races and anyone can sign up for those spots by committing to a fundraising minimum.

You can get the full list of opportunities here, but I wanted to mention a couple close to me.

Sunday Sept. 8th is the Chicago Half-Marathon. It also includes a 5K. For those who wish to run the half-marathon, the fundraising minimum is $500. For those who want to do the 5K, the fundraising minimum is $300.

Sunday Oct. 6th is the Cleveland Rock and Roll Half-Marathon. The fundraising minimum is $500. This looks like a particularly cool race, as there will be bands and cheerleaders/dance squads throughout the route. Plus, I’ll be there to cheer you on. I mean, that alone is reason enough to sign up for the team, right? :-)

I know the fundraising might seem daunting, but it’s really not that bad! Kerri, the NMF’s new community events manager, will be there for you every step of the way. I’ve got all sorts of ideas too, and I’d love to help promote any local fundraising events!
Marfan sydrome