News

Hi this Friday The Northern School of Music, in Hartlepool are holding a fundraiser to raise money for Oxford FOP research. Jasmines sister Sienna has been attending the school for a while now and loves it. Jasmine wanted to go so we gave it a go and she really loves it too, its a great activity for a child with Fibrodysplasia Ossificans Progressiva as singing is really good for her. Miss Toni  the girls teacher asked if we would like her to organise a fundraiser and we are so grateful. A big  Thank you to Miss Toni and all the children who will be taking part,  parents and all the staff at the Music School.

Here is an article about our sponsored walk
http://www.hartlepoolmail.co.uk/news/local/walk-in-support-of-young-jasmine-1-4464451

A huge thankyou for Mr. Rob Felton, from Dudley, West Midlands for going the ‘extra mile’ and swimming to raise funds and awareness for FOP Research. Rob has raised £162. The cheque will soon be arriving on Steve Bowden’s desk, ready for our barometer to ‘move on up’!

Everyone in the FOP community really appreciates your effors Rob. Cheers from all of us. See Rob on Facebook.

If anyone has a friend or contact, who likes swimming, or perhaps for whom swimming is a challenge and therefore just as, (if not more so!), worthy of sponsorship, why not give them a sponsor form,a towel and a huge smile

As a very tentative swimmer – I may have to take up some arm bands and take up the challenge myself ……………..!

Thanks everyone for all your support, especially my friends Helen Johnson and Jane Campbell.

Have a good weekend, let’s hope for blue skies and sunshine.

Sheryll and Lucy

Sheryll and Lucy have also been raising awareness in the local newspaper

Stourbridge campaigners race against time to fund research

9:30am Thursday 26th April 2012 in News

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.