Archive for the ‘Marfan Syndrome’ Category

Brooklands Radio features ‘2013 Nordkapp Challenge’

Hi everyone, We were very pleased to have received a notable feature on Brooklands Radio last week to promote the 2013 Nordkapp  Challenge and raise valuable awareness for Marfan Syndrome. Brooklands Radio is based extremely near the old Brooklands Raceway and Museum, in the Weybridge/Byfleet area of Surrey, and is an extremely popular meeting point […]

Marfan Syndrome: Know the symptoms – save a life

“By my calculations, there are 9,000 people in the UK who are unaware that they have Marfan Syndrome – if left undetected up to 1/3 of whom may not live beyond adulthood.” Dr. Anne Childs, Medical Director of The Marfan Trust The official figures show that 1:5,000 people potentially have Marfan Syndrome, yet through the […]

2013 Nordkapp Challenge Overview – PDF download

Hello all! We’ve received numerous requests to create a dowloadable PDF document that provides all the key information regarding why we have created this challenge and what we hope to achieve for The Marfan Trust and Marfan Syndrome in general. Version one of this PDF is now ready and attaced to this webpage – you […]

Lucy’s story

The 2013 Nordkapp Challenge for The Marfan Trust has been inspired because of one person – Lucy Morris. Throughout Lucy’s entire life she has been in and out of hospital, receiving treatment for a never-ending range of health issues. However, less that 12months ago, Lucy finally understood the cause of these issues when she was […]

The Marfan Trust

Founded in 1988, the Marfan Trust funds research into the cause and prevention of Marfan syndrome, a dominantly inherited cardiac disorder which also affects eyes and skeleton. What is the purpose of the Marfan Trust? The main objective of the Trust is to support medical research so that more is known about Marfan syndrome and […]