Any Mom's of Marfan Syndrome?

Amanda - posted on 01/12/2012 ( 1 mom has responded )




My youngest son, who will be 11 next week, has Marfan Syndrome. He has never met another Marf before, I have only met 1 adult very briefly. I'm wondering if there are any Marfan adults or Mom's in WI or MN? It sure would be nice to get in contact with some, to talk with about frustrations, hopes, and fears.


[deleted account]

My name is Maya and I have Marfan, as does my 13 month old son. A long time ago I started a Marfan group on here. I also run the National Marfan Foundation's teen program, which your son is almost old enough for.

Some ideas on how to connect:

Wisconsin groups:

MN groups:

NMF Connect (a social networking site for people with Marfan & their families; there is a nice sized moms group there:

Some Facebook groups:

If you want to talk more with me, you can email me at marfmom at gmail dot com. I also have a blog about being a mom with Marfan:

Finally, there is a telephone support group starting up for parents of kids with Marfan and you can get more information by emailing Jennifer Buffone at the NMF: jbuffone at

Hope this helps! :-)

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