July 13, 2009
by marfmom
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Other installments in this series are Part 1, Part 2, and Part 4 I had decided that my mission was to make sure 1) everyone knew about Marfan and 2) people with Marfan knew how to advocate for themselves, especially … Continue reading
July 3, 2009
by marfmom
17 Comments
Abbey brought to my attention that while I’m doing this series on how I got involved with the National Marfan Foundation, I never have actually explained what Marfan is. So, without further ado, I bring you Marfan 101. OK, we’ll … Continue reading
July 2, 2009
by marfmom
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A few entries back I mentioned that one of the people I’ll be on the NMF Conference panel with is a teen named Laurel. Really, she’s fabulous and I am so proud of her for all that she’s accomplished. She … Continue reading