I will expand later as it is late right now, but one thing I am involved with is the National Marfans Foundation (NMF). I do not have Marfan's but have known those who have and use some of my spare time to benefit the organization. Check out my cafepress web page for shirts and things I've designed. A couple of bucks goes to the NMF with each item.
How Tall is Your Family?
My father is 6'4", mom is 5'8", and my sister is 5'11. There is some height on both sides of the extended family as well.
Welcome to "The Tall Street Journal". Thats excellent that you are involved with the NMF.
I actually put in an entire category in the forums section called "Health Concerns"; information about Marfans being one of the things I thought would be of great interest to taller people, especially since I'm sure many have not heard of it.
Scoliosis and then just general teens growing up tall aches and pains issues will be good as well.