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FOP Friends Blog

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

The FOP Patient Connection Registry 

The FOP patient’s registry is an exciting initiative developed by the International Fibrodysplasia Ossificans Progressiva Association (IFOPA) to help understand and learn more about FOP. This research study will collect and report selected medical information on individuals living with FOP, through a series of online surveys. 

“A registry is essential for understanding any rare disease and developing potential therapies.” Said Betsy Bogard, IFOPA Director of Global Research Development, talking about the benefits of an FOP patient Registry. “One of the biggest challenges in very rare diseases such as FOP is limited patient data. The FOP Connection Registry puts the power of data collection directly into the hands of the patient community and will allow us to bring together a much larger volume of data.”

Once registered, participants will be able to complete as much of the surveys as they would like - the more information the better, but if participants can only fill in a few survey items, even that data will be helpful. The surveys may be completed by the individual living with FOP or by someone else – for example, a parent, relative, or other caregiver on the participant's behalf. In some cases, more than one person will complete the survey questions – whatever method works best for the individual and family will work for the Registry.

Not only will the registry help increase knowledge of FOP, aid research, and help guide clinical trial design, it will critically show pharmaceutical companies that the FOP community are pro-active in the search for a cure. Together we will make a difference!

For more information on the registry and how to join visit:

Clementia Pharmaceuticals are currently trialling a treatment for FOP.  Want to learn more? 

Clementia have produced a document, with UK information, for patients who want to find out more. Including the answer to; Who is Clementia? What are the objectives of Clementia's clinical trial program? Who is eligible?...and more.

 Click HERE or on the link below to download the document.

Mari Wyn Jones
Tuesday, 26 January, 2016 - 09:51


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