If you haven’t come across the Virgin Money Giving site before, please do take a look at it. This is how it works:

1. If you want to undertake a challenge, participate in event, mark an occasion etc to raise money for the FOP Research Fund, you can go onto the site and create a Fundraising Page (by clicking on the Start Fundraising link). You enter details about the event, select the charity you wish to support (University of Oxford) and register yourself. You can also add text about what you’re doing and about FOP. We have some basic text about the FOP Research Fund that people can use or amend if they like (attached). In addition, you can add photos and set yourself a fundraising target.

Here is an example of a Fundraising Page: http://uk.virginmoneygiving.com/DominicShadbolt

This Fundraising Page was set up by Dominic Shadbolt. Dom and his friend Dave (who call themselves “Team Fixated”) are doing a 24 hour bike ride to raise money for a multiple sclerosis research unit at the University of Oxford. Scroll down Dom’s page and you’ll see his donations.

2. You then direct all your potential sponsors to your Fundraising Page and they can click on a button to donate. Gift aid is added (if they tick the right box) and they can leave you messages of support (or be anonymous if they prefer). It’s great for galvanising support and monitoring your fundraising progress. The really nice thing though is you don’t have to collect the money yourself.

3. Any money that is raised for the University via the Virgin Money Giving site is transferred to our bank account here once a week in a lump sum. This means we need to log into the site and run a report to see which Fundraising Page/s the money has come through so that we can ensure it is correctly allocated. For this reason, it would be very helpful (although not essential) if anyone using the site to raise money for the FOP Research Fund could let us know.

I hope that all makes sense, but if you have any questions then please do let us know. The site also has an excellent helpdesk (I know because I called them!) which can guide you through setting up a Fundraising Page if you get stuck.

Please do pass this news on to anyone you think would find it helpful.

Best wishes,

Lou

Louise Angelou
Senior Campaign Executive – Medical Sciences
University of Oxford Development Office
University Offices, Wellington Square

All proceeds go to finding a cure for FOP – a condition which gradually turns healthy children like Oliver into human statues.

For just £150 per ticket, enjoy a sumptuous four-course banquet evening with friends or family.

The stunning setting is perfect for entertaining corporate clients, or just enjoying a wonderful evening with friends.

Most importantly, you will be helping to find a cure for FOP by raising urgently needed research funds.

For Full Details and Bookings Click Here: [oxford.friendsofoliver.com]

Here are some pictures of our Curry night fundraiser.


Meet Edward bear who was kindly donated.

If anyone would like to help as we still have £100,000 to raise to get to our target please get intouch through the fopaction website.

Sheryll

Another big thankyou to my cousin Jennifer Lofthouse who is organising more fundraisers,she got intouch with the Northern Echo Newspaper to see if it would help raise awareness and help with fundraising, here is the article http://www.thenorthernecho.co.uk/features/leader/9683595.Facing_a_race_against_time/

More FOPACTION news
Well done Sheryll and all the staff at THE REDFORTE INDIAN RESTAURANT WOLLASTON STOURBRIDGE
for raising £774.45 at the curry night last Sunday.

Also Olivers family raise awareness in The Whitley Bay Guardian.

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

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.

Thanks guys – you are amazing!

Sheryll Hadley

http://www.facebook.com/events/232061730234955/

April the 23rd in 2006 the gene was discovered. This wonderful discovery has helped research all over the world by opening many doors in trying to find a  adequate treatment and eventually a cure. Please everyone spread the word.

Margot has kindly donated monies for our disco/buffet event on November 10^th, to help with the cost of catering. She has also donated House of Commons Whisky for the ball at Keble College on September 8^th.