Morning Stephanie,
I have not been ignoring your request. Everyday I try to dedicate an hour or so to researching Marfan's. I've also seen the document produced by the VA that they name "Marfan's" as an inherited disease and specifically exclude it from the birth defects list from Vietnam.
Certainly you have by this time found the National Marfan Foundation ( Marfans.org ). The also have a Teen Site that Dillon can communicate with at (
teennetwork@marfan.org -
http://marfan.org/teenspace/ )
I will continue to search. Never forget that there is one Great Physician you should be going before for help.
Bob