News

Upcoming event in France

Thankyou FOP FRANCE for all your support we couldnt have reached our fundraising target without your help,please see this slide show thats been put together VIDE GRENIER POUR FOP FRANCE
Please see the poster thats been put together for the upcoming event in France

Thankyou everyone who attended our annual FOP ACTION meeting.

Please see the minutes from our FOP ACTION meeting this January.

Minutes

Thankyou everyone who attended and a special thankyou to FOP FRANCE for travelling so far.

As you can see we have the same amount to raise this year to keep all the resarchers working next year but we are off to a great start. This year we will have till the end of December to raise the funds.

If anyone would like to help please get intouch.


New venue for annual Research and FOP family meeting 30th of January

Tomorrow the meeting will now be held at The Oxford Hotel, please see the website for more details.
http://www.pumahotels.co.uk/hotels/central-england/barcelo-oxford-hotel Buffet lunch will be provided.

This is due to the increased number of people wanting to attend the meeting. The room is booked from 12:00 till 16:00 with the meeting sheduled to start at 12:30

Please see the agenda for the meeting.
AGENDA MEETING 30TH JAN

Raising awareness in the Media

Please see the lovely article of Seanie Nammock with Mick Murphy in The Kensington and Chealsea Croninclerticle

After the brilliant documentary The Human Mannequin Louise Wedderburn has raised so much awareness in the media, here is an article which was in the Daily Mail online with a clip of the documentary and when she was on This Morning TV show.

Congratulations we reached our fundraising target.

For the first time ever families and friends of fopaction have raised enough money to fund research for another year at Oxford University. There has been so many events across the UK and France.

On behalf of FOP ACTION and The Botnar Research Centre, Oxford I would like to give an enormous thanks for all the unending kindness, generosity and energy you have shown over this last year. As you are aware, we started 2012 with a huge task and budget to meet.

February last year, saw us with just £6,000 towards a desperately needed total of £120,000 in order to support the work of our brilliant researchers at The Botnar Research Centre, Oxford. At that time, it seemed an unachievable goal, a mountain too high and a distance too far. Yet, here we are one year, on with the total of £124,080.28 having been raised! This is just incredible and shows the determination of a small handful of families.

From walks and climbs, to cake sales and line dances, chest waxes and curries, to auctions and moustache makeovers, not to mention calendars and concerts – 2012 has seen it all!
At our meeting on January 30th, the next annual budget will be set. Once again, we will be scratching our heads and thinking up ingenious ways to raise funds, so that we can bring the cure for FOP closer. By working together as a larger stronger team, we can unite in our quest for our one common, all important goal. Please therefore, I urge you to join us in helping to FIND THE CURE FOR FOP.
With very grateful and heartfelt thanks to all our wonderful supporters in 2012, without your help and support we would not have reached our target.

Sheryll Hadley

Chairman FOP ACTION UK

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Just some of the fundraisers that have took place in 2012, please get intouch through the fopaction website if anyone would like to share anything.

Best Wishes

Kelly Sanderson

More community support to help Jasmine

Ive been overwhelmed by the support we have recieved and can not thank everyone enough.

Jasmine who is now six and big sister Sienna seven have been attending The Northern School of Music in Hartlepool this year and since we found out that we had such a large amount to raise. Toni, the girls performance arts teacher has really supported us. Over the year she has raised over £3,300 for fop research. The last event was the Christmas show which was fantastic. Sienna and Jasmine had a great time performing and Jasmine sang by herself for the first time. Its been great to have both girls attending the School together on a Sunday morning. Some groups Jasmine wouldnt be able to attend so would recommend a performance arts class. The Christmas concert raised a brilliant £1,147. Jasmine is third from the right.

I would like to say a massive thankyou to Mums The Word all female choir who raised £550 for Oxford FOP Research.FOP Research is one of three charities the amazing choir helped at a Christmas concert.Please see the article in the Hartlepool Mail.

Friends of Jasmines grandma have also been helping, thankyou to the girls at First choice recruitment for doing a charity run and raising a brillint £390 and Stephen Barraclough for hosting a halloween party and raised a brilliant £220.

Dyke House School held an amazing Christmas concert which involved loads of the students and other groups that are based in Hartlepool. I would really like to thank Kirsty Henderson, all the staff that helped organise the event and all the children that took part. Everyone had an amazing time and it was brilliant to see so much talent in Hartlepool. I was overwhelmed by the turn out with over 350 people attending. Dyke House school should be really proud of what was achieved. It is hard to get people to help such a rare condition that only effects effects about 45 people in the UK and only 700 people are diagnosed worldwide but im so happy with the support we have had this year from the people of Hartlepool. The night raised a brilliant £2,060.

Jasmine and Sienna attend St John Vianney, the school had a collection at the Christmas Nativity and raised a brilliant £332. It was brilliant as usual,thankyou to everyone that donated.
James cambell a friend of the school has also raised over £600 by doing various events including a triatholon. Thanks to all the staff at the school and everyone else who kindly sponsored James.

I also would like to say Thankyou to Garry Mayes and friends who donated £750 at the beginning of the year. This money was raised by compleating The coast to coast bike ride. Again we are so grateful and overwhelmed by the support.

Thanks to friends and family who donated instead of sending Christmas cards. Please see my virgin giving page

If anyone can help out in 2013 we would really appreciate it as we need to fund the research again.

I would also like to thank all the families across the UK and France who have raised funds this year we should all be very proud. 2012 has been a fantastic year for fundraising, can we do even better in 2013 ?

Amazing community support for FOP families

Much needed funds have been raised this year through various events throughout the country. With having such a large total to reach for such a rare condition its been fantastic to get more support from local buisnesses, schools and many more.

On Tuesday 4th October myself Seanie, Sinead and Liz (who made the request to the Headteacher Mr. Sellens) went to Thomas Jones Primary School near where we live to be presented with a cheque for £500. This money had been collected by the children,teachers and parents by doing mufti days and collecting money in buckets at the school gate. The students we met from the youngest to the oldest were an absolute testament to the school and made us all feel truly welcome.

Marian

A huge thank you to Centro Galego de Londres, Spanish Restaurant, Harrow Road, London NW10. Our family went there this afternoon where we were presented with an amazing amount of money raised – £1675. Another example of our amazing community working together in the hope of finding that cure for FOP.

Marian

Last month there was another fundraiser for FOP in Mayo Ireland organised by my family, which took place in the Merry Monk Ballina. They raised over 5000 euros. It was an absolutely brilliant night which I went to. So a massive thank you to them the Herberts’, Coughlans’, Birranes’, McCluskeys’ O’Donnells’ & Cawleys.

Marian

http://uk.virginmoneygiving.com/team/climbingforacure

Hope everyone has had a fantastic Christmas.
Little Oliver had fun raising awareness at his local church.

Exciting new developments for FOP Research. All families welcome to the FOPACTION meeting 30th of January.

PLEASE READ THE FOLLOWING IMPORTANT INFORMATION. BLOOD SAMPLES NEEDED TO HELP FOP RESEARCH.

AN EXCITING NEW DEVELOPMENT FOR RESEARCH ON RARE DISEASES

Dear All

The whole FOP research team at the University of Oxford is greatly inspired by the tremendous efforts of you all over the past year, that have resulted in the magnificent funding total for FOP research in the UK.

As you know, our work in the Oxford team is dedicated to understanding the full effects of the FOP mutation and is directed towards finding an effective therapy for FOP. This amount will doubtlessly allow the work our two exceptional postdoctoral research scientists, Dr Georgina Kerr and Dr Eleanor Williams, to continue working on FOP for the next twelve months. With your continued help we hope can build on our current discoveries to achieve this therapeutic goal in the forseeable future.

We look forward to seeing as many of you as possible at the next FOP ACTION UK committee meeting, that will be held here in Oxford at the Botnar Research Centre from 12.30pm on January 30th 2013.

With many thanks to you all for your tremendous efforts at fund-raising for our work and we send all our best wishes for a very Happy Christmas and a healthy and hopeful New Year from all your friends at Oxford.

Kind regards

Jim and Alex

Movember raises much needed funds.





Mick Murphy who is a family friend and local postman organised a Movember where he was sponsored for growing a tache for the month. This ended on Friday 30th November in the Eagle Public House where he had it waxed off. You can really see his pain in these photos. It was an amazing evening with all the Ladbroke Grove Community supporting him. After the waxing there was a disco and raffles. The evening made a brilliant £3000 He gave me £1000 of it last week which went on Sineads’ Virgin Giving page, I put a further £1900 on today and a cheque for £100 has been sent to Oxford directly.

My cousin Tony Cahillane did a Movember Fundraiser for FOP Research collecting over £1000 on his Virgin Giving Website. www.virginmoneygiving.com/anthonycahillane.
Liz Sampson his partner did the PR and is still running around liaising with various people who are organising forthcoming fundraisers. It is now looking very hopeful that we will reach the £120,000 by New Year



Sinead will be doing a newsheet update on all the fundraisers that have been happening recently. Everyone has been so amazing. Louise’s programme really helped to get the word out there. I know it really touched so many people around here as they never realised the full story of FOP.

Check Sineads’ page she is really doing well.

Best wishes to all.

Marian
http://uk.virginmoneygiving.com/team/climbingforacure

Louise who recently featured in the documentary The Human Mannequin has started a fantastic blog. Check it out, great ideas for Christmas.

I’m going to be doing an Advent Calendar for the next 24 days!! I’m Beyond Excited for this and of course Christmas.
11 Christmas Gift Guides later and there done!!
For more Info on the Advent Calendar and Gift Guides Check out my Blog … The Link is: http://thebakingfashionista.blogspot.co.uk/

Hi All just want to thank the guys from Babcock Rail who did Movember for FOPaction all a bit of fun £10 an entry and £10 from wife’s who did not want there husbands to grow a moustache
There were a few donations made on line and I will get the rest of the money to Oxford when I get it all in the winner of the bag of sweets picked by Dylan was Chris Stewart well done mate

Thanks,Chris Stewart, Innis McDonald, Allan Devlin, Davie Mills, Donald McNeil and Davie Smith.

George Scott






More amazing people help FOP Research, £30,000 to raise before the end of January.

SKY DIVE
Sunday November 11th

FOP ACTION, all patients, families and friends would like to say a huge Thank you for all your amazing support in helping us to raise awareness and Research Funds for FOP. Your very brave efforts are really appreciated. We know it must have been incredibly scary and cant imagine what it felt like. Thank you both so much with your support we have raised a truly brilliant £3,000. Many thanks to Helen Jhonston for arranging this event.

There are some truly amazing people out there.

CHRISTMAS FUNDRAISING , First ever FOP ACTION calenders on sale now. Please see the home page for more information.

Marion and Family from London have been so busy with fundraising and have recently had an amazing £5,000 donation on the Kilimanjaro give page. More details of the familys fundraisers to come soon. Climbing fopr a cure

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