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CRUCIAL breakthrough ... Rachel Hopwood reads all about the successful research into FOP with her brother Ross, mum Julie and father Steve.
CRUCIAL breakthrough ... Rachel Hopwood reads all about the successful research into FOP with her brother Ross, mum Julie and father Steve.

Science breakthrough lifts hope for Rachel

Michael Byrne
28/ 4/2006

BRAVE Shawclough woman Rachel Hopwood is dreaming of starting a family after a vital breakthrough in research into the disease from which she suffers.

Rachel, aged 21, of Hillstone Avenue suffers from fibrodysplasia ossificans progressiva (FOP), which affects one in two million people and turns muscle to bone.

Although she has always tried to lead a normal life, there is a 50 per cent chance her children would have FOP.

But now, after 15 years of research, doctors in Pennsylvania have found the gene fault which causes the disease.

Rachel herself made a contribution to the research by giving blood samples when she went to a conference on the disease in the United States.

Her family have also raised more than £30,000 for research both in the United States and at the Nuffield Orthopaedic Centre, Oxford.

A lot of this was raised with the help of television producers John and Trish O'Hara through charity events at the Town Hall.

Rachel said: "This is brilliant news and I really hope it will help me.

"I love children but I wouldn't want to have any because of the risk of them having FOP. It is such a painful disease that I wouldn't want them to suffer.

"I work as a childminder three days a week and would like to work full-time, but find it difficult because of the FOP."

Rachel has done a lot to raise awareness of FOP and was the focus of a television programme called 'Living for the moment' made by John and Trish O'Hara for Granada Television.

Her bravery has won many admirers and she was chosen to carry the Commonwealth Games baton into the Town Hall.

Professor Jim Triffitt, from the Nuffield centre, said: "This is the biggest breakthrough yet into research into FOP.

"It's the first big step towards finding a cure. It will also help us with research into other diseases such as osteoarthritis and osteoporosis, where bones become brittle. Rachel and her family have made a significant contribution towards finding this cure.

"It's such a rare disease that it is difficult to get funding for research and the help given by the Hopwoods and other families has been crucial."

Rachel's mum Julie said: "We're really pleased about this news but the research still goes on because there is still a lot of work to do."

Mr O'Hara said: "This is great news for the FOP community worldwide and has been brought about by the effort of people to raise money for research."


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Most recent 2 of 2 user comments

   Thank you for reporting on this important discovery and the people behind it. My hat is off to everyone who stayed in the fight and battled FOP to this point.

It is amazingly exciting that the FOP gene is involved in the bone making process in such a vital way that controlling it can help not only the handful of people with FOP, but millions suffering from all kinds of bone related disorders, such as osteoporosis, heart valve disease, spinal injuries and more.

Now lets learn how to stop it in its tracks so that Rachel, Roger, Daniel (my son) and all the others can have futures without constant pain and stiffness.
Jeri Licht, New York, USA
1/05/2006 at 18:34
   That is a great article. The FOP-Community is working worldwide on letting other people know about that desease. Keep on writing about Rachel!
Roger zum Felde, Germany
29/04/2006 at 19:00
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