Latest fundrasing, Auction and fire men shave heads all for FOP research.

Margot our patron very kindly donated money for the buffet and made bids for lots at the auction. She joined Rachel and Julie at their table. We raised an amazing £5034.

The David Lloyd Centre at Brierley Hill, let us stage the event there. Over 150 people attended. The staff at David Lloyd were great helping us to set up the tables. Everyone really enjoyed themselves. Bob the DJ and auctioneer was brilliant.


Patron Margot with Rachel Winnard.

Well done and a massive thankyou to the Stourbridge firemen who had a sponsored head shave.

White Watch at Stourbridge Fire Station stepped out for FOP ACTION and decided to have their heads shaved to raise funds for us. Sheryll met up with Fire Officer, Jamie Wilkes earlier in the year, during the Saturday Car Wash for FOP. Jamie offered further help and said he would be in touch. True to his word, even though he has a very busy schedule at the Station, he rallied his colleagues round and with arms twisted, persuaded them to go ‘bald eagle’ for FOP.

Local hairdressers, Amanda Woodall and Sandra, from Headroom, Enville Street, Stourbridge offered help with with headshave. Mark Noott, opted for the mohican look and others looked on in anticipation.

Sheryll got them all a bobble hat to keep warm! Officer, Jamie Wilkes is wearing Lucys’ hat with a bow.

These men are absolute stars. When the bells ring, they never know what horrors and sadness might await them, yet they are always ready to stop forward and help others. White Watch a huge thankyou from all patients, families and friends. You have helped us raise awareness for FOP and much needed research funds. Sheryll and Lucy and all FOP families xxxx


First ever naked calendar for fop. 22 ladies got their kit off for a great cause to raise money for research into the illness their friend Rachel Winnard age 28 years suffers from .
It took four days altogether to get the photographs done as it was difficult getting the girls together as everyone has such busy lives and couldn’t always make it on certain dates when the photographer was also free. What a laugh we had though trying to make sure everyone everyone was covered up in the right places. We had planned for everyone to meet to do the picture of the banner one night and we had to cancel as the weather was terrible so then it wasn’t easy organizing another date where everyone could be there. But we finally got all the pictures for each month and hopefully we will raise lots of money and lots of awareness. We need to say a big thank you to Katheryn Jefferson from Delicious photography who gave up her time for us and took all the photographs free of charge. We also need to thank Ross Hopwood , Rachel’s brother who has spent hours editing the photos. We would also like to thank the horse and it’s owner for the loan of the stables .

Most of all thank you ladies so much for being part of our calendar and try to get selling them at £9.99 each .

Please contact Steve or Julie on 01706373030 to order.

Julie Hopwood


The Human Mannequin 1st of November channel four.

The documentary of Louise Wedderburn will be showing on Thursday on channel four at 9pm. This will raise so much awareness for FOP, thank you so much Louise for putting yourself forward and sharing your life with everyone. Here is the link which gives you a little bit of info about the documentary.

Louise and Dr Alex Bullock did an amazing interview on the programme This Morning. Here is the link to watch her Human Mannequin.

With Louise working so hard raising awareness filming the documentary since last night when it was on tv fopaction has had an amazing 2194 visitors. She has also said she would like to raise money to try and keep all the researchers working next year at Oxford University. Here is her Virgin Giving Site. Please share this with as many people as possible.

Another great donation from FOP France

Another great donation from FOP France of 5,000 euro, that is now a total of 15,000 euro altogether. This was from a collection of donations by newspapers.

The little boy in the picture Alexandre suffers from fop. His parents are working so hard to raise awareness and funds in France. The couple have just also launced an appeal to enterprises in France who may be interested in helping. Its so great we now have help in France, thankyou so much.

Oxford FOP Research Summer update

Please see the following Oxford report about on going research

24 people and Tilly the dog climb Mount Snowden

There were 24 people and our dog Tilly who met at Stefans Snowdon cafe called Pen Ceaunant
at 9am, it is at the bottom of the main path to Snowdon.
The weather was very wet and windy even at the bottom so we all had our waterproof jackets and trousers on.
We all set off together but some walked quicker than others, I didn’t go too quick as I had already been up once to check it out so I knew we had a long day ahead!
It wasn’t to bad up to the halfway cafe, it was very windy and drizzling on and off but was ok until we got to the cafe and it was shut due to bad weather so I thought Janice was going to cry lol!
We carried on and the weather was getting worse, we got to a tunnel where the train goes over just over half way up and the wind was howling and it was awful it nearly blew me over I had to get out of the tunnel fast !
There we met some lads that were doing the three peaks for make a wish charity, they had already done the other 2 peaks and they had a pink teddy shark with them so we got a photo with them, Rachel was lucky enough a few years ago to have her wish granted with make a wish foundation.

As we got further up the wind we were told was 70 miles an hour, it was horrendous at that point I was getting very worried for all my friends but no one had come back down so we felt like we had to carry on, we were thinking if we got to the top we could get the train down .
At one point Steve got blew by the wind and he tripped on a rock and fell over, it was at a point where there was a big drop and he let go of Tillys lead so she started to panic in the wind and I had to try and catch her, thankfully I got hold of her and Janice and Jimmy helped Steve up, so frightening, I nearly cried !

We carried on , and then three of or friends were on their way back down, they told us the others had got on the train to go back down, so at least we knew everyone was safe , they said it was the last train down with the staff on from the cafe as the cafe had shut due to bad weather . They said if we hurried up we would catch the train, but we got there and it was just pulling away !!!

So we had to walk back down, the wind blew Janice over and I fell on top of her but we were ok and it was much easier and quicker walking down.

We got back to Pen Ceunant Snowdon cafe at about 2.30 pm where Stefan had made a lovely buffet for us all and we had cups of tea coffee and the well earned beer and wine!

Myself, Steve, Rachel, Paul and family would like to thank our amazing friends for doing this trek for FOP research, we have amazing friends !!!
Also we would like to thank Stefan at the Pen Ceunant for making us all welcolme, a lovely place for us all to meet afterwards for great food and drinks !

London to Brighton Bike Ride and Fire men from Stourbridge do a sponsored head shave.

A huge thank you to Maureen, Bernie and Mark from the Media and Communications Department at the Town Hall in the Royal Borough of Kensington and Chelsea London who completed a Cycle Ride from Albert Bridge, London to Brighton Promenade on Saturday 15th September 2012. They raised an amazing £735 excluding gift aid – £905 with gift aid (and still counting) for FOP research. Seanie did her work experience with them in 2011 and loved every minute, she said her time there inspired her to pursue a career in communications.

See their Virgin Giving Link:-

Sinead, Seanies sister is also doing really well with sponsors for her Kilimanjaro climb next year. Please see her Virgin Giving site.
Sinead is organising the event and would be very happy if anyone would like to join her team, please see .CLIMBING FOR A CURE for more information.

Good luck Little Oliver who has just started school, you look very smart in your new uniform.

A huge thanks to all the wonderful firefighters at Stourbridge Fire Station who are holding a head shave and chest waxing event to raise funds for fop research. Please see the virgin giving page. Thanks guys you are all stars.

Sheryll and Lucy xx

Please keep sending pictures in of all the amazing fundraisers or any awareness raised. You can click on the contact button on the home page of Fopaction.

Best wishes and good luck Sheryll for your flowerpower disco tomorrow night.

Kelly, mum of Jasmine age 5 with fop.

Latest fundraising, please help us reach our target.

Hi everyone there has been all different kinds of fundraisers the last few weeks and we are doing so well but we really need to keep going as we are nearly half way to our total.Every penny counts so if anyone can help please get intouch or just donate through the website. We have already raised more than any other year and with Richard Simcox funding the last two years Oxford have a great FOP research team together but for anyone that didnt realise Richard cannot fund two of the researchers next year so this is the first year we have had such a large target.
Sheryll Hadley organised a Fish and Chip night and raised $500 approx £400 in France. Thankyou everyone who made this happen, looks very tasty.
Toni from The Northern School of Music that Jasmine, age 5 with FOP attends with her big sister Sienna organised another amazing fundraiser. It was a little miss/mister Hartlepool competion and Hartlepool Search for a star.I cant thank everyone enough from all the amazing children, everyone who attended and everyone who helped to organise it. It raised £1,004 Sienna and Jasmine

A few days after the competition in Hartlepool we went to Thirsk Town Hall where my cousin Jenny had organised a Auction night. There was a brilliant band playing and a great Auction. A massive thankyou to Jenny for organising it, every penny she raised she really worked hard for. It was a brilliant night and great to see all the family and raised a brilliant £2,360. Thank you to Sheryll Hadley who gave us the holiday to france to auction and ferry crossing it was going to be auctioned at for the Oxford Ball but sadly that had to be cancelled but hopefully there will be another one organised maybe in the Manchester area next year. While we where at Thirsk we met some lovely ladies one was my cousin Jenny’s mother in-law. Her and her friends had previously held a darts marathon and presented us with a cheque for £1,090. Well done ladies we really appreciate it. Its been four years since we started fundraising and its really hard to keep going as we feel like we are asking the same people to help so for ladies that have never met us before it was lovely to meet you and thankyou so much.
Last weekend a week after the Auction my other cousin Andrew and his friend Kev only climbed The Three Peaks. It was the hardest challenge ever and nearly got lost in the fog up the first mountain. The lads started the challenge while we where all in bed Friday night and took them 24 and a half hours.Firstly climbed Ben Nevis then drove down to the Lakes and climbed Scarfell pike and then drove to Wales and climbed Mount Snowden. The challenge was to do it 24 hours but with nearly getting lost, kev hurt his back and also got a puncture they did so fantastic. I am so proud to have such a lovely caring family we are so grateful.

Andrew and Kev raised an amazing £1,593 please see the Virgin giving page If anyone would like to take part in a challenge big or small please get intouch if you would like information on sponsor forms or how to set up a virgin giving page.

Raising awareness in the media

Fop has been in the media alot the last few weeks while we are trying to get to our £120,000 goal this year.
There is a very detailed article in the Irish World Newspaper Page 4 and 5 of the Irish World Newspaper Thanks Seanie and family for working so hard to help Oxford fop research continue.

Rachel and Olivers family working hard to raise awareness and funds.
Jasmine in the Hartlepool Mail thanks to Mandy for raising funds.
Jasmine in the Hartlepool Mail again to promote Little Miss/Mister Hartlepool and Search fop a Star organised by Sienna and Jasmines teacher Miss Toni at The Northern School of Music.

Latest fundraising

Well done to Tibbsy and Mick for compleating the Mad challenge of the Tough Mudder. See the Virgin giving page
Little house they stayed in the night before. The guys in action.

Sienna, Jasmine and Libby at Libbys baby brother Ellis christening. Thanks Michelle and Lee for having a raffle for fop research on Ellis’s special day and raised £268.

Thanks to all the guys who compleated the really challenging Lands end to John o Groats bike ride. Please see the Virgin Giving page

Well done Mandy for SHAVING ALL HER HAIR OFF to help raise more funds to support Andrew and Kev who are planning on climbling the three Peaks in 24 hours.
Please see the virgin giving page to support Andrew and Kev, only 38 days to go.
Please keep sending your pictures in and keep supporting us as we have lots more to raise but great to see all the wonderful events taking place around the uk.

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