FOP Friends Blog

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This week, one of our lovely supporters went the extra mile by getting the FOP Friends logo tattooed on his arm! What an ingenious way to raise awareness for FOP - if that's not dedication, I'm not sure what is!

Not everyone has to do something permanent to raise money or awareness for FOP though. Why not do something semi-permanent such as chopping your hair for FOP? Or why not organise a simple dress down day at work and get all your colleagues to donate to the cause? A little can go a long way and every penny is valued. Look out in the next couple of weeks for an A-Z list of easy fundraising ideas to get you inspired for 2017!  


If you're feeling particularly motivated right now, don't hesitate in signing up to the Great North Run this year and running for our team! Don't worry if you don't have a direct link to the charity, we would still love it if you ran for us! Places are filling up fast so don't miss out on a spot.

There was some sad news in the FOP community this week. Adrian Berry, a sufferer of FOP, sadly lost his life at just 40 years-old. This is a devastating reminder of how cruel FOP can be and reaffirms how important it is that we all work together to hopefully one day find treatments for FOP. 

If you haven't already, don't forget to like us on Facebook and follow us on Twitter to keep up-to-date with all the latest news. 

Hannah Dempsey
Friday, 20 January, 2017 - 16:46

For FOP Friends, 2016 was a very exciting year! We saw the advent of our new quarterly newsletter Together and celebrated the 10th anniversary of the ACVR1 gene discovery with our #FunFeet4FOP campaign. The second FOP Friends Conference also took place, welcoming over 100 delegates, and bringing together the FOP community in style. 

Research into FOP has continued to make great progress. Once again, FOP Friends, FOP Switzerland, and FOP France commited to help fund the Structural Genomics Consortium (SGC) research team at the University of Oxford. We can now announce that we have successfully supported the team for a further year in 2017, having reached our 2016 fundraising goal. 

The FOP Connection Registry also successfully reached its first-year milestone in July, so far attracting 178 patients from 28 different countries. Biotechnology company Regeneron's clinical trial began in June investigating the Anti-Activin A antibody in humans. While, pharmaceutical company Clementia extended its phase 2 study of palovarotene having found positive trends in reducing bone formation in FOP sufferers and wanting to investigate this finding further.

Additionally, we were very fortunate to receive a grant from BBC Children in Need to fund a weekend away at Centre Parcs for children affected by FOP. This will take place in March of this year and all the children are really looking forward to it!

None of this would have been possible without our great supporters who ran, cycled, and swam all to raise funds and awareness for FOP. Some got muddy, while others completed their event on the hottest day of the year! Twenty-two of you took part in this year's Great North Run and even the little ones came out in force with sponsored haircuts, toy sales, and fun runs!

Thank you to every single one of you who has supported FOP Friends on this journey to find a treatment and a cure for FOP. Here's to 2017 being an even greater year with even more fund and awareness being raised!

Hannah Dempsey
Thursday, 12 January, 2017 - 17:09
Mari Wyn Jones
Thursday, 7 July, 2016 - 10:41

We are delighted to announce that BBC Children in Need have awarded a grant to FOP Friends to fund an Activity Weekend Break for children aged 18 and under, affected by FOP. Our chosen date is the weekend of 17th - 19th March, 2017 and the destination is Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area. 

Center Parcs Sherwood Forest boasts a variety of activities to suit children of all ages including the subtropical swimming paradise, soft play areas, craft activities and treasure trails. 

This fun-filled weekend will give our children the opportunity to come together and try exciting new activities in a relaxed and safe setting. The Activity Weekend Break also offers a welcome opportunity for parents and family members to meet, share experiences and spend quality time together in an enjoyable environment. 

We will be in touch in the next few weeks with more information about this exciting event, but for now please SAVE THE DATE!

Mari Wyn Jones
Wednesday, 1 June, 2016 - 10:01

We hope to raise awareness on International FOP Awareness Day and throughout April with ‘Fun Feet for FOP’ photos and #FunFeet4FOP. It’s been a busy 10 years for FOP researchers and clinicians following discovery of the ACVR1 gene that causes FOP on April 23rd, 2006. This research breakthrough was pivotal in improving diagnosis for FOP patients and progressing the search for a cure. Within the past decade genetic testing has been made available to improve patient diagnosis, the amount of interest from researchers worldwide has increased, and more recently we’ve even seen the launch of the first clinical trial for FOP. 

So why Fun Feet you may ask? 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 it’s symptoms, leading to misdiagnosis (often of cancer).  

We will be getting together a Fun Feet Countdown on Facebook and Twitter, up to April 23rd and
We Need Your Help!

Get involved with 4 simple steps:

Step 1

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

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 and include details about how to donate to FOP Friends:

Text CFOP00 £20 (or any other amount) to 70070 or Donate 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.                                                                                                                                 

We thank you for your support in raising awareness for one of the rarest conditions known to medicine.





Mari Wyn Jones
Wednesday, 1 June, 2016 - 10:02


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