Get involved! Send your photos, video, news & views by texting SB NEWS to 80360 or e-mail us
Stourbridge campaigners race against time to fund research
9:30am Thursday 26th April 2012 in Oldswinford
CAMPAIGNERS face a race against time to raise £120,000 to fund research into a rare disease that threatens to cripple a former Old Swinford woman.
Lucy Pratt, aged 25, is one of just 45 people in the UK who suffer from FOP(fibrodysplasia ossificans progressiva) - an incurable condition which causes healthy muscles, tendons and ligaments to turn to bone - effectively creating a second skeleton inside the victim.
Brave Lucy, however, has managed to defy the odds to complete a degree at St Catherine’s College, Oxford University, and now lives in London where she is working as an assistant editor for a scientific publishing company.
She faces a daily struggle against the devastating and degenerating genetic disease which has restricted her arm and back movements as well as her jaw.
But according to her mum Sheryll Hadley she remains “incredibly positive”.
Sheryll, aged 54, however, now faces a battle against the clock to raise £120,000 to ensure vital research into the disease continues.
Together with other parents of FOP sufferers, she has lined up a series of fundraisers to help raise the money to enable researchers at Oxford University to continue their work to find a cure or a way of halting the life-limiting disease - as no Government funding is available.
Sheryll, who is chairman of FOP Action UK, said: “They’re trying to find a way of shutting the faulty gene down. If a cure is found there’s every chance it will help people with post operative bone growth, chronic anaemia and osteoporosis. It does hold hope for those with other diseases.
“£120,000 will fund a year’s worth of research. We’ve got to have it by the end of the year to keep the post graduate researchers going at Oxford University.
“A lot of progress has already been made and we’re very possibly just two to three years away from clinical trials. “If this money is not found, we’ll be in a mess.”
Fundraisers lined-up to pull in the pounds kick off this weekend with a curry evening at the Red Forte Restaurant in Wollaston which has pledged to give 50 per cent of its takings on Sunday April 29 to The University of Oxford FOP Research Fund.
A barn dance at St James Church Hall, Wollaston, will follow on May 18 and the day afterwards Sheryll will be joining firefighters at Brierley Hill Fire Station for a charity car wash on May 19.
There will also be a fundraising ball at Keble College, Oxford University, on September 8 followed by a disco at Brierley Hill’s David Lloyd leisure centre on November 10.
In the meantime - Stourbridge MP Margot James has agreed to be a patron of the charity FOP Action UK.
Sheryll said: “She’s been really supportive. She accepted our invitation without hesitation. We now have a public figure people can identify with and a public voice, which can make our needs known to central Government.”
Tickets for the barn dance and disco are both priced £8 and are available from Helen Johnson on 07773 855554.
Anyone wishing to hold a fundraiser in aid of FOP is also asked to get in touch via the above telephone number or website www.fopaction.co.uk