Raising awareness about Marfan Syndrome

After having to delay for a few years for various personal reasons I am finally doing the ride late May into June next year.
I am doing the ride to raise funds and awareness for http://www.marfantrust.org/
Marfan syndrome is a very little known condition which if not diagnosed and treated can prove fatal-as it did to my close friends son who died at 22 while back packing in Australia.
He had a lot of the classic signs of marfans yet despite his parents taking him back and forth to the doctors when he was a child he was never diagnosed, "growing pains" being cited time after time.
Ironically when he was admitted to hospital in Perth after feeling chest pains the first thing the aussie doctor said to him was "have you heard of marfans?"
Tragically despite an emergency operation he died the day after.
The main reason for posting my thread is just to make any of you reading it aware of this condition.