Musings of a Marfan Mom

New Additions

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First of all, thank you to everyone who voted for the National Marfan Foundation during the Chase Giving Campaign. If you haven’t already heard, we placed 22nd and won $20,000 in the second round, bringing our total grant money to $45,000! The initial $25,000 goes towards conference, to keep the clinic and children and teen programs free. The other $20,000 will go towards programs that promote early diagnosis.

Second of all, thank you to those who shared your stories last week. I’m grateful and humbled that you allowed me to share them here, and the response to them was overwhelming.

And that brings me to the new additions. First and foremost, I’ve always wanted this blog to serve as a resource. In that vein, I’m going to be opening up 3 new permanent Marfan & related disorders sections of the blog:
– a portion for diagnosis stories
– a portion for birth stories
– a portion for adoption or surrogacy stories

If you’ve shared your story in the past, it will be linked. If you’d like to share your Marfan & related disorders story, just submit it to me via email (preferably with a photograph). I’ll publish it on the blog & then add a link to it in the directory. That way, everything will be in one place, easy to find, instead of having to sift through pages and pages of blog. I’m still on vacation, but my webmaster (aka Mark) and I will work on it later this week.

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One Comment

  1. Very cool!


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