Musings of a Marfan Mom

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A couple of weeks ago I requested votes for the National Marfan Foundation as part of the Chase Community Giving Contest on Facebook. The top 100 charities received $25,000 and a chance to compete for even more money. Luckily, the NMF did place in the top 100 and the money earned is going towards our annual conference, in part to help keep it free for the kids and teens I have the privilege of working with.

Now, we are competing for an additional $20,000 – $500,000! Any money earned will go towards our programs that promote early diagnosis. For Marfan syndrome, time of diagnosis can literally be the difference between life and death.

You’ve read my story. You know how important the NMF is to me. This organization is my family. While I was fortunate to be diagnosed fairly young (8), I didn’t find the NMF until I was 13. By contrast, Baby J was diagnosed before he was 3 weeks old. I knew the moment I laid eyes on him in the OR. He will be 7 months old at his first NMF Conference this summer. It is my prayer that he grows up with a stronger sense of self than I did, because he’ll never know a time when he wasn’t surrounded by Marf role models and the latest medical information.

I’m begging each and every one of you to vote. We must be in the top 25 to earn money. Starting tomorrow, I will be posting a story a day from families and individuals affected by Marfan syndrome for the full week of voting. They’ll share their diagnosis journeys and how they’ve benefited from the National Marfan Foundation. A link to voting will also appear at the end of each post.

Please, help us spread the word. I am going to do everything I can to help us get in the top 25 but even if we don’t, this is an invaluable opportunity to tell the world a little bit more about our condition. If even one person recognizes themselves or a loved one in the description of Marfan during this campaign, we’ve done our job.

Join us.

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