July 31, 2012
by marfmom
0 comments
I’m headed the National Marfan Foundation conference! I won’t have Internet while I’m away, but I’ve pre-scheduled some guest posts while I’m gone. If you’ll be at the conference, please come say hello to me!
June 21, 2012
by marfmom
15 Comments
The perhaps peculiar – but beautiful – part of being a part of the Marfan syndrome community is the intense bond that is developed among affected families. I’ve never seen else anything like it. Every time a newly diagnosed, scared … Continue reading
May 29, 2012
by marfmom
3 Comments
Every year I make a slideshow of the teen conference program (which I run with my friend Ben). Sadly, it’s taken me 10 months to finish this one up, but here it is! I love getting to work with the … Continue reading