FOP Friends Blog

On May 14th 2017, thirteen of our fantastic fundraisers descended on Regent's Park in London to take part in the annual DIFC Superhero Fun Run. Dressed head to toe in snazzy superhero clothes, with Wonder Woman and Batman making appearances, our runners completed the fun run course in style. While thirteen may be an unlucky number for some, it turned out to be very lucky for our charity, FOP Friends. Our superheroes managed to triple their original fundraising target, collectively raising an impressive £3,200 and this is still increasing! 

A massive congratulations and big thanks to everyone who took part in this challenge. FOP Friends is very grateful for all the support on this journey to find treatments/a cure for FOP.

>>Donate now to our FOP Superheros <<

Hannah Dempsey
Monday, 22 May, 2017 - 16:26

Sunday 23rd April was a busy day for FOP Friends and the FOP community. With International FOP Awareness Day taking place, our #FunFeet4FOP campaign was in full swing and it was a massive success. The FOP community, from across the world, rallied round and posted their funky feet and fancy footwear, raising lots of awareness for FOP. Check out our gallery to see some of the fabulous photos. 

Also on the day, William and his friends, aged just 10 years old, were out in force raising awareness and collecting donations from the Ramsbottom community by setting up a fundraising stall in their local Morrisons supermarket. Having previously raised almost £300 by completing the 2016 Bury Family Fun Run, and just under £400 by setting up a sweet stall at Ramsbottom Farmers' Market this March, William has fast become a prominent fundraising champion for the FOP community. Well done, William and friends!  

Further down south, we also saw on Jack and Jo complete 26.2 miles respectively. Jack ran the Southampton Marathon while Jo took part in the London Marathon. Collectively, they raised over £2500 for FOP Friends and the FOP community. Thank you so much for your efforts and support, Jack and Jo! 

Overall, Sunday 23rd April was an amazing day filled with fantastic fundraisers and super supporters who raised so much awareness for FOP and the FOP community. 

The great effort did not just stop after that Sunday though. Just a week later, on Sunday 30th April, we saw Sheryll, Cate, and Howard take part in the Hackney Half Marathon raising over £2250 for FOP Friends! While Sheryll admitted she was not a runner, she overcame the challenge and was fantastic at fundraising for the FOP community.

To all our amazing fundraisers and supporters, thank you so much for the continued effort you put into raising money and awareness to hopefully, one day, find treatments/a cure for FOP. 

Hannah Dempsey
Thursday, 18 May, 2017 - 15:23


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


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