Welcome to the forum, and it is awesome to have someone with your scientific background among us. If you've not already heard/read of this, you might find it very, very interesting to read up on a similar condition in equines, DLSD/ESPA which also is a systemic connective tissue disorder. Sadly, I know more about that than I wish I did, having had a horse that had the condition. The way human and veterinary medicine sometimes overlap is fascinating to me. (We all are mammals, after all!)
There is an ongoing field trial of a nutritional intervention that apparently is more successful the earlier it is started. Whether anyone is also trying that for humans with Marfan syndrome at this time is unknown, but if I had that disorder, based on the efficacy of it in the horses being followed over time on it, I would be very interested in trying it too. The Veterinarian who is conducting that, and who also does a lot of searching of human medical literature for any useful extrapolation, in addition to veterinary, is Dr. Eleanor Kellon, website
www.drkellon.com in case you want to get some research abstract references from her. There is a good website with some info,
http://www.angelfire.com/bc/curlygait/DSLD.html that may be of interest. The files of the yahoogroup which requires membership to access (
http://tech.groups.yahoo.com/group/DSLD-equine/files/) contains links to some research, such as Dr. Cothran's finding of some genetic markers. Dr. Cothran's info can be found on
http://www.cvm.tamu.edu/vibs/FacultyDetail.aspx?ID=GCothran - since you mentioned wanting to 'link up with some researchers ' either he or Dr. Kellon are likely to know who might be currently working on this. The nutritional protocol being field-trialed in horses is AAKG and herb Jioagulan (Gynostemma Pentaphyllum), and the use of one or the other or both together is very much tied into whether there is active inflammation or not. The J-herb is being studied in human medicine too, if I recall correctly because it stimulates e-NOS.
Edited to add, I am sure marfaned knows this, but some of the other folks might not? The significance of the acronym e-NOS means endothelial Nitric Oxide production is enhanced. This is useful to know because if I recall correctly, that is what can improve vasodilation, and thereby circulation...very interesting topic for us cardiac problems afflicted types!