son was under many different hospitals since his birth in 1968. Feeling that there had to be a common reason for the
various problems he faced I took shorthand notes at each consultation and typed them into a large Manual. How could
there possible be so many different opinions?
In 1981 we
first heard the words “Marfan syndrome" and set out to learn all we could. We were concerned to find that little
seemed to be known and understood at that time and vowed "to make a difference" – thus the idea of the Marfan Association
UK was first conceived.
In 1983 our
son was finally diagnosed with Marfan syndrome and we are grateful to our GP and other medical specialists who were involved
in finally putting a name to all the issues.
In our quest
to learn more about the condition “the Rust family” flew to America to meet Priscilla who was involved with the National Marfan Foundation,USA. We shall all be
eternally grateful to her for providing us with Marfan literature and with even more fervour for the challenge as we returned
to the UK.
to build a library of Marfan literature while spending a huge amount of time and effort bringing awareness to the medical
profession, persuading the media to promote Marfan syndrome and supporting families who were going through the same experiences
In 1984 we
worked extremely hard to firmly establish the Marfan Association UK.
We have a Marfan Support Network across the UK
A very helpful Medical and Scientific Advisory Team
A twice yearly magazine called Marfan "In Touch"
A National Annual Marfan Information Day
Marfan Training Seminars
A Young Peoples Group ...... AND A LOT MORE!!
DO JOIN US AND HELP TO MAKE
"Together We Can!"
Chairman/Support Co-ordinator and Trustee.