Marfan-Forum.org.uk great support and info for marfan syndrome and other CTDs
Marfan-Forum.org.uk
marfan forum: - The best place to get support!
URGENT APPEAL - From the Marfan Trust
Dear Friend
In this the 20th Anniversary of the Marfan Trust,we have been offered £1.36 million by a major UK charity to mount a medical trial, which promises to provide a great leap in prevention of aortic aneurysms in marfan syndrome. The trial will take 5 years and involve 21 centres in the UK and 500 patients.
However, this award is conditional upon our raising a further £500,000 over 5 years (£100,000 per year for 5 years). If we lose this major award, the medication trial cannot be undertaken. All funding raised will go directly to the medication trial, which will benefit every single patient in the UK, as well are marfan syndrome patients worldwide.
Fundraising in this financial climate is proving very difficult for even very large charities, but it is the smaller organisations such as the marfan trust that are most effected. The trust has approached over 200 charities and organisations for funds towards the medication trial, but so fare we have had a very poor response.
We are therefore making a special urgent appeal for donations through our supporters, with a deadline of September 30th, set by the major charity.
This is the most important research project designed in the 20 years of the Marfan Trust's life. It is Our top priority.
Please could You give urgently and generously. Any contribution you can give, no matter how small, would be greatly appreciated.
To donate to the marfan trust's appeal, go to their website marfan trust
Description
marfan forum: [1] is the UKs best support forum. We are the busiest, which means We have alot of members who will be able to provide You with great support and excellent information about marfan syndrome EDS,LDS and other connective tissue disorders.
What is Marfan Syndrome?
Marfan syndrome is an inherited disorder of the body's connective tissue that affects men and women of any race or ethnic group
Marfan syndrome was identified in 1896 by a French physician, Antoine Marfan. The syndrome is an inherited disorder of the body's connective tissue which affects the heart, eyes and skeleton in handicapping, painful and even mortal ways.
Those affected suffer from one or more of the following problems:
eyes - dislocation of lenses, short-sightedness, retinal detachment, glaucoma
skeleton - excessive height with long limbs and fingers, flat feet, protruding or indented chest bone, loose joints, scoliosis, early osteoarthritis
heart - ballooning and potentially fatal tearing of the aorta, backward billowing of the heart's valves
Sufferers can live with the first two problems - the last can cause death at an early age unless diagnosed in good time and treated medically and surgically.
Genetic Males and females are affected equally. Each child of an affected parent has a 50% chance of inheriting Marfan syndrome.
Children and Adolescents Children and adolescents with Marfan syndrome look and feel different and restrictions are imposed on them because of their poor eyesight, lax painful joints and cardiac problems. Even the games other children play are frequently too dangerous for children with Marfan syndrome. People with Marfan Syndrome
Currently there are 10,000 patients with Marfan syndrome in the UK alone, and over a third die in early adulthood. Many of these deaths could be prevented with early diagnosis and effective treatment. Many other people who are affected lead severely restricted lifestyles.
source with thanks from * marfan trust
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