Musings of a Marfan Mom

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

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  1. Hi!!

    I am a much older Marfan Mom than you :-). My 18 year old daughter has Marfan. We’ve suspected since she was 8, but didn’t really diagnose until recent genetic testing came back positive, to go along with all her other symptoms. We are now in the process of family testing.
    I VERY much am hoping to do the Cleveland Rock and Roll half for Team Victory! I do live in the Boston area so would have to travel, oh and train :-)!! But I am hoping to. Such a cool event and a GREAT cause!!!



    marfmom Reply:

    Oh good!!! You should definitely sign up, and I will come to cheer you on! Are you connected with the Boston chapter? I think they still have a local teen group.


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