Musings of a Marfan Mom

Things of Interest

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Happy New Year, everyone! I’m feeling refreshed after taking a couple of weeks off.

I’ve got a couple of links I think you’ll be interested in. First of all, do you remember the post Callie’s Story? Callie’s mom, Kristin, wrote it as a tribute to Callie, who passed away shortly after birth from very severe Marfan syndrome. Kristin (who is pregnant with a little girl!) and her husband have started Kindness for Callie. They’re going to do random acts of kindness in Callie’s name, as well as donating money to various causes several times a year. I think it would be amazing if the Marfan community came together to support this, and we all did a random act of kindness (or more!) and reported back to Kristin. Please spread the word!

Also, for those of you who speak Spanish, Mundo Marfan has published a compilation of Marfan stories. The book, Sobrevivencias (Survivals), is separated into three sections: daily experiences of those affected, surgical experiences, and the experiences of parents. Sobrevivecias is available for FREE download! Please let me know if you read it!

The National Marfan Foundation has a couple of announcements as well.

1) A genetic counseling graduate student is studying diagnosis change in regards to Marfan syndrome. For example, I was given a diagnosis of Marfan, then I was undiagnosed, then it was switched to vascular-EDS, then to Loeys-Dietz, then back to Marfan. I *think* she is looking for people whose most current diagnosis is Marfan, but I am not clear. I emailed the student, Kristen Koprowski, for more information and if you’re interested in participating (it’s a phone interview), the study email is kkoprowski+dxstudy@arcadia.edu.

2) The NMF is re-designing their website. They have a survey out, which will be open until Jan. 11th (this Friday), asking what you would like to see in the new website. If you use marfan.org at all, PLEASE take a moment to fill this out! I think it took me 5 minutes!

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4 Comments

  1. Thanks so much for the shout-out Maya!

    [Reply]

    marfmom Reply:

    Anytime!

    [Reply]

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