Musculoskeletal Disorder

Q and A is on various types of musculoskeletal disorders..

The musculoskeletal system consists of the skeletal system -- bones and joints (union ... There are 5 basic tissues comprising the musculoskeletal system

New Charity for Duchenne Muscular Dystrophy is launched

By Anonymous

New Charity for Duchenne Muscular Dystrophy is launched


A new charity is being launched this month for sufferers of Duchenne Muscular Dystrophy (DMD). Parent Project UK has been set up by parents and friends of boys with DMD and is dedicated to finding a cure and viable treatments. (www.ppuk.org)

DMD is the most common, progressive and severe type of Muscular Dystrophy. It affects one in 3,500 boys worldwide and is the biggest genetic killer of young people. DMD causes severe muscle wasting so that by the time these boys are between six and twelve years old they will be in wheelchairs, and by their late teens they will be preparing for death.

It is an “equal opportunity” condition. Although many cases of Duchenne are hereditary, a lot of cases today are caused by spontaneous mutations. In other words it can happen to anybody of any background or nationality – it is a case of “genetic roulette”.

One of the families involved in the setting up of Parent Project UK is the Catlin family from Cardiff. Nick and Janet’s son Saul, now 18months, was diagnosed at 5 months with DMD after a routine blood test for liver function. Saul is their first child and the experience of diagnosis and acceptance has been devastating. "There is a death sentence on the head of my son" says Nick, a software engineer. "A cure is not an impossible dream. We need more resources and facilities.” His wife, Janet a secondary school teacher adds “We need to ask the government to fund research into DMD so that our sons are given the chance to live full and happy lives.”
At the moment Saul is a healthy, busy toddler more concerned with cars and diggers than health matters. It is hard to believe that such a vibrant little boy will be condemned to such a short life, never knowing his potential.

February 11-16 is International Parent Project Week where groups in Europe and America will be staging events to raise awareness of this condition. On the 21 December 2001 after years of campaigning the American group saw the passing of the Muscular Dystrophy Community Assistance, Research and Education Act through Congress which ringfences millions of dollars for research into DMD.

Parent Project UK aims to raise money for research into DMD both through its members but also through putting pressure on the Government. Professor Francesco Muntoni of the Hammersmith Hospital and Imperial College London says “Government money should be ear-marked for research into DMD. At present the research funds for looking into the cause and treatment of this group of relatively rare disorders is very limited.”

As Janet says: “It is the Year 2002 and boys across the world are unable to live into middle age and nobody is doing anything about it. Many of these boys are too young to speak for themselves so as their parents and friends we have to do it for them. Enough is enough.”

Please contact and join Parent Project UK at www.ppuk.org
Parent Project UK, PO Box 46, Cardiff CF11 9YU
Tel : 029 20310193

Notes for editor

Parent Project UK will be launching at 12pm midday on the steps of St Martins in the field Trafalgar Square where we will be launching and giving out balloons and wearing our blue ribbons (blue for boys)
There will be a photographer present so we can send you photographs
DMD is an X chromosome linked genetic disorder that affects boys. It can be passed genetically through the mother but many new cases are “spontaneous mutations” ie not hereditary. (see web site : www.ppuk.org) Although a huge step forward was taken in 1986 when the make up of dystrophin (the protein the DMD boy is missing) was discovered, little progress has been made – lack of funding is impeding this.

Professor Francesco Muntoni       
Department of Paediatrics & Neonatal Medicine
Imperial College School of Medicine
Hammersmith Hospital, Du Cane Road
London W12 ONN, UK
Telephones:     + 44 20 8 383 2485 (Clinical Secretary)
        + 44 20 8 383 3295 (Academic Secretary)
Fax:         + 44 20 8 740 8281 (Department)
Email: f.muntoni@ic.ac.uk

Attachment is photograph of Saul Catlin who is 18 months old and has DMD.

Please contact Janet Hoskin : janet.hoskin@ntlworld.com
Tel: 029 20310193
07980 599843



This article courtesy of http://musculoskeletaldisorders.info/.
You may freely reprint this article on your website or in
your newsletter provided this courtesy notice and the author
name and URL remain intact.