FOP Friends Blog


International FOP Awareness Day 2017 takes place in just over two weeks time on Sunday April 23rd and we want as many people as possible to get involved with our #FunFeet4FOP campaign to raise lots of awareness for FOP. The #FunFeetForFOP campaign is now in its second year with last year being a great success - people wore wacky shoes/socks, had funky feet, and posed in crazy locations. An animal or two even got involved!



Why Fun Feet? Well, an important early indication of FOP is malformed big toes at birth. This classic sign is often unrecognised due to lack of awareness of FOP and the symptoms, leading to misdiagnosis (often of cancer).  

 Every week we have been posting a variety of #FunFeet4FOP photos on our Twitter and Facebook pages. Check them out, give us a like, and share some of the ones you find the funniest! 

Here are 4 simple steps to get involved:

Step 1

Tell your friends, family, colleagues...everyone and share the link to this webpage.

funfeetforfop lamb

Step 2

Find your style and take a photo! Ideas include: Wearing snazzy socks, wacky wellies, bizarre boots. Get creative with an eye-catching pedicure, or take a snap of your pet in slippers! You could even hold a Fun Feet Day at the office, or a Flip Flop Day, asking participants to donate, with proceeds going to FOP Friends.

Step 3

Upload your photos on social media along with the hashtag #FunFeet4FOP. Be sure to tag FOP Friends on Facebook and Twitter and add the link to this website page. 

Step 4

Share your social media posts with friends and followers - tag five friends (one for each toe!) and get them to join in with the campaign - and include details about how to donate to FOP Friends:

Text CFOP00 £20 (or any other amount) to 70070 oDonate Online via Virgin Money Giving here. You could even set up your own fundraising page on Virgin Money Giving. 

If you have any questions or would like some more ideas, please contact us. We will be running a competition for the best post - so be creative! We can't wait to see what you come up with.     


Hannah Dempsey
Thursday, 20 April, 2017 - 14:46

Without the support of businessman, Richard Simcox, it is hard to imagine where the funding for FOP research would have come from in the last decade. Acting as one of the world's leading FOP philanthropists, Simcox has donated hundreds of thousands of pounds to support the only FOP research in the UK at the University of Oxford.

simcoxSimcox has championed and funded FOP research for almost 20 years, first becoming aware of the condition through a young boy living with FOP near his home in Aberdeenshire. He then decided to sponsor a fellowship in FOP research at the University of Pennsylvania in 1999, after a meeting with Dr Fred Kaplan in Aberdeen. This was soon followed by a PhD scholarship at the University of Aberdeen and subsequently grants at Oxford University to support Professor James Triffit's research into FOP.

Since then, there has been some incredible advances in research, as Richard himself describes:

'The most exciting development in the research since I've been involved has to be the 2006 discovery of the causative gene.'

Whilst most of the research to identify the FOP gene had been carried out at the University of Pennsylvania, Simcox had also been sponsoring work at the University of Oxford since 2003. Oxford's Matthew Brown and James Triffitt were collaborating with the team in Pennsylvania and narrowed down the mutant gene's location to a small region on chromosome 2. Previously, it had been thought that chromosome 4 was the most likely location. Given that our 46 chromosomes collectively contain approximately 25,000 genes, knowing which chromosome to search and precisely which location on it to search was critical. Soon after this discovery in Oxford, the AVCR1 gene was identified. 

With the gene that causes FOP now identified, research could focus on developing a cure, and in 2010 Simcox covered the cost of setting up two dedicated FOP research posts at the University of Oxford. FOP Friends, to this day, continues to raise funds for these posts. 

To help make sure we find a cure, Simcox has just helped to fund a scholarship at Oxford to support a PhD student working on FOP research. The 'Oxford-The Simcox Family Graduate Scholarship' is in memory of Richard's mother, Constance Mary Simcox nee Killingback. Simcox explains why:

'We all love our mothers but mine was really special. She gained a first class honours degree in biology at Imperial College, London, and was doing work on tropical diseases when she married and had my sister and me. She was unable to continue the research work she was doing, but I vowed to myself that I would somehow pick up the medical research baton and run with it on her behalf. So, when I became involved with FOP research, it was the ideal way for me to achieve this ambition. That is why the Deed of Gift is dedicated to her' 

FOP Friends and the UK FOP community are extremely grateful for the continued support Simcox offers to find treatments/a cure for FOP. 

Hannah Dempsey
Thursday, 30 March, 2017 - 15:44

center parcsFebruary has flown by and March is finally here. The Center Parcs Activity Weekend Break, funded by Children in Need, is now only two weeks away! It has been nearly 10 months since the FOP Friends Conference and Family Gathering so this weekend away provides an excellent opportunity for families, with children affected by FOP, to catch up with one another. With a variety of activities taking place including swimming, pottery, and an evening group meal, it should be a fantastic weekend for all the children. 

sweet stall

This February, we had a fantastic little fundraiser. William, aged 9, successfully raised just under £400 for FOP Friends. Along with some classmates, William set up a sweet stall at Ramsbottom Farmers' Market. He organised everything himself; speaking to local businesses, deciding what to sell, and advertising his event. It was a sweet success! This builds on William's previous fundraiser efforts where he ran the Bury Family Fun Run. It was for ages 9-14 and for the first time ever, William ran a race on his own. The race was 1.4km long through the centre of Bury. He managed to come a very impressive 4th place, raising £275 in the process. 

superhero run


We still have places left for the Great North Run and would love for you to run for us regardless of your ability. Last year, Suz Grant ran the Great North Run for us and she is doing it all over again this year! Will you join her? 


If you don't fancy doing a half marathon just yet, why not sign up to Skyline's Superhero Fun Run and run for FOP Friends? Choose to do either the 5km or 10km run, get a free costume, and bring the whole family along for a day that's set to be super! 


Finally, there is just over seven weeks until International FOP Awareness Day! Don't forget to get everyone you know involved with our #FunFeet4FOP social media campaign - the more photos, the more awareness raised. Last year, we got an amazing response. This year, let's try and top it and do even better!


Hannah Dempsey
Thursday, 2 March, 2017 - 16:34

We are excited to announced that IFOPA and FOP Friends have combined forces to fund a new research project at the University of Oxford. You can read more about this, along with a statement from Chris Bedford-Gay, on the IFOPA webpage. 

sweetWe also have a sweet supporter raising money for us next week - William, who is only 9 years-old and one of our youngest fundraisers, will be at Ramsbottom Farmers' Market on Sunday 12th February selling a wide range of sweets for all you lucky customers. He organised this venture all by himself - ordering sweets, contacting local businesses, and making advertisements - so make sure you try to get down and show your support! If you are unable to make it down, why not buy some virtual sweets and donate to William's Virgin Money Giving page? All the money donated will go to help find treatments/a cure for FOP.

Valentine's Card

Valentine's Day is also less than two weeks away. Why not surprise your loved one with a special personalised e-card? Save yourself the last minute rush of running out to the shop to grab a card, save the planet by not wasting paper, and donate to FOP Friends all at the same time. Everyone's a winner! 

Hannah Dempsey
Thursday, 2 February, 2017 - 16:55

Chris Bedford-Gay, his son Oliver, and FOP Friends received a special acknowledgement this week in Fiona Cummin's debut novel 'Rattle'. Chris consulted on the book as one of the main characters suffers from FOP. The book is set to be a best-seller - the film rights have already been snapped up! 

vmgsuperheroAlso this week, the Virgin Money Giving donation system will be updated. On the 29th January 2017, the donation system will become easier and more efficient to use. However, it will require that our Regular Donors will need to re-register their cardetails, otherwise the monthly payment will be cancelled. If you're not yet a Regular Donor but would love to become one, please do not hesitate in signing up or contact us for more information. 

Finally, calling all superheroes! This May, Skyline are hosting their annual Superhero Run and we want you guys to get involved! Choose between doing the 5k or 10k challenge and then run, jog, walk, or even fly to the finish line on this fantastic fun run! Each person also gets a free Superhero costume when they sign up and there are special routes for prams/wheelchair users. What is not to love? Be heroic today and contact us if you're interested as places will fill up fast!


Hannah Dempsey
Thursday, 26 January, 2017 - 17:04


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