May 25, 2011
by marfmom
0 comments
Kaitlyn is one of the fabulous teens I have the privilege of working with. She currently serves on the Teen Council, a subcommittee of the National Marfan Foundation’s Board of Directors. My name is Kaitlyn, I am 16 years old, … Continue reading
May 24, 2011
by marfmom
2 Comments
Ben and I first met as teenagers at the 1997 National Marfan Foundation conference. The program was small then: just 15 of us. These days he & I co-lead the teen program, which regularly sees 80-100 teens each year. “Look … Continue reading
May 23, 2011
by marfmom
4 Comments
“The lens in your daughter’s eye is dislocated.” And with these words, our journey to a Marfan syndrome diagnosis began. Our beautiful daughter Alexa was born in April of 2003. She was perfect. She was our first baby and we … Continue reading