The Zippy Zebra is run by Tina M. who is a stay at home mom of 3 teens (2 girls and a boy). Her daughters and herself struggle daily with EDS (Ehlers-Danlos Syndrome Type 3). She has many wonderful links and stories about dealing with EDS and other conditions. (Including Marfan syndrome)
Musings of a Marfan Mom is run by a Latina mother of two named Maya. She and one of her sons have Marfan syndrome. She volunteers with various aspects of the Marfan Foundation and is one of the wonderful moderators for the Marfan Syndrome FB page.
The Marfan Foundation home page is a great place to find resources and learn about Marfan syndrome and related disorders. If you have questions, they typically have the answers or will do their best to find them.