FOP Friends Blog

As you may know, most of the money raised by our supporters goes towards funding FOP research, including maintaining the work of our Oxford University Research Team. We last interviewed Dr Bullock in May 2014 just before our first FOP Friends Conference and Family Gathering and since then there has been a lot to catch up on...

Who currently makes up the research team at Oxford University?

The research team now combines staff working on the ACVR1 gene in the context of two distinct paediatric diseases, FOP and the rare brain tumour DIPG.  The core FOP group comprises Dr Eleanor Williams, who is funded through your donations, as well as Miss Elizabeth Brown, who is a second year PhD student funded by an Oxford-The Simcox Family Graduate Scholarship.  The Brain Tumour Charity provides additional support for Dr Jong Fu Wong and in future a further research assistant that we hope to recruit soon. Finally, Dr Roslin Adamson has been supported for the past year by charitable funds coming via M4K Pharma for DIPG research.  She will be leaving us in March and will be replaced by a 6 month intern Miss Elisabeth Rothweiler.  The team are supervised by myself with additional help from my departmental colleague Dr Gillian Farnie. Emeritus Professor Jim Triffitt also continues to provide his oversight from retirement.

Miss Elizabeth Brown, Dr Roslin Adamson and Dr Jong Fu Wong at the 2018 FOP Conference and Family Gathering in Manchester, UK

Over the last five years what advancements have been made by the Oxford Team?

Our most significant finding has been the clinical drug candidate saracatinib (also known as AZD0530), which we identified as a highly effective inhibitor of the FOP causative protein ACVR1 (also known as ALK2).  As we’ve reported previously, saracatinib was first developed by AstraZeneca for the treatment of ovarian cancer.  While it did not show sufficient benefit for drug approval in this condition it has been made available by AstraZeneca for testing in other diseases.  Importantly, saracatinib has now been tested in over 700 people and was shown to be well tolerated when taken as a daily tablet.  We are currently completing the necessary legal paperwork to start a new trial using saracatinib in FOP later this year.  As soon as we have more information we will communicate this through FOP Friends. In addition, we have been studying the root cause of FOP at the molecular level.  All cases result from tiny changes in the ACVR1 gene (typically one erroneous letter - A, C, G or T in DNA - out of 1530 letters in the coding sequence).  As a result, a faulty protein is made with one erroneous amino acid out of 509. We’ve been able to solve the 3D structure of one of these faulty proteins and have produced several others for functional analyses.  It has been hypothesized that the faulty protein may simply have broken its shackles (e.g. tight binding to the FKBP12 protein) like a rocket detaching from a launch pad.  Our experiments confirm this effect, but also suggest that the FOP rocket has an extra engine.  Fortunately, drugs such as saracatinib can bind to the FOP protein to switch the rocket off again.

What are your short- and long-term plans for future research?

With a current IFOPA project grant we are conducting a feasibility study to test whether other more unique drug binding pockets can be utilised on the FOP protein. Targeting such sites with small molecule inhibitors would allow the longer term development of a next generation drug with the hope of it having the fewest side effects. We are also exploring potential synergies between drug development for FOP and the brain cancer DIPG.  Both groups of scientists are interested in the same faulty ACVR1 protein, but drugs for DIPG are desired that cross the blood-brain barrier efficiently to kill tumour cells. Dual action drugs that could potentially work in both diseases may include so called “epigenetic inhibitors”.  These can control non-heritable factors such as whether DNA is packaged up for storage, or left open for the cell’s machinery to convert this information into functional proteins and action.  In the short to medium term, we would also like to understand more about the molecular mechanisms of FOP.  What factors contribute to the FOP rocket?  In the long term, we hope that FOP will have a safe and effective treatment and that individuals with FOP will no longer rely on researchers to establish a cure.

Is there anything else you would like to add?

In addition to her FOP research role, a proportion of Dr Eleanor Williams’ post is funded by Wellcome for public engagement activities.  Thus, over the past year Ellie has attended several science fairs including the Headington Festival in June, Oxford Science Festival in October, and Oxford Open Doors, where she gave the public tours of the laboratory as part of an annual city wide event in September. This coming year she will be attending the ATOM festival in Abingdon on the 24th of March and will be involved in the Cowley Road Carnival on the 7th of July. She will also be attending a Diamond Light Source open day at Harwell, Oxfordshire (date TBC). In other exciting news, Ellie has been collaborating with the Science Museum in London to create part of a display on drug discovery where she has used the FOP protein as an example of how drug design can work. This should be part of a new permanent display and we are very grateful to Nicky Williams and FOP Friends for providing a wonderful quote for the museum to use to go with our images.As ever, we are always happy to be contacted by anyone in the FOP community who is interested in seeing the laboratory and learning what we do.

Dr Eleanor Williams and Dr Jong Fu Wong

Hannah Dempsey
Monday, 8 April, 2019 - 11:13

#FunFeet4FOP is just over two weeks away and we’re so excited to announce that Skillsarena, the Chelmsford-based online talent management solutions provider, will be supporting us this year! On 23rd April, the whole team will be wearing flip-flops to the office to raise awareness of FOP.

 About Skillsarena: 

Skillsarena's employment testshelp you recruit with confidence. Skillsarena create and develop highly configurable online tests and training modules designed to measure and provide evidence of candidate and staff workplace skills. Verify candidate skills through hundreds of online assessments with their Skills Testing; Personality Profiling test that delivers powerful and detailed insight and 360 Degree Feedback tool that reviews individuals from multiple perspectives. 

They also offer Skills Testing specific for certain industries. A variety of Retail specific tests to assess a candidate’s ability to handle real life retail scenarios; online recruitment assessments designed for the Housing industry; pre-built Finance assessments enable you to identify candidate knowledge related to financial responsibilities; as well as Logistics skills testing which assess basic “day to day” driver knowledge required by law.

 What is FOP?

FOP (Fibrodysplasia Ossificans Progressiva) is one of the rarest, most debilitating conditions known to medicine.  Muscles, tendons & ligaments turn to bone imprisoning the body in a second skeleton. There’s currently no effective treatment, or a cure, and the average life expectancy is only 40-years-old.

What is #FunFeet4FOP?

#FunFeet4FOP is a social media campaign that takes place every year on 23rd April, coinciding with International FOP Awareness Day, and the discovery date of the gene responsible for FOP, ACVR1. People wear wacky shoes, snazzy socks, paint their feet crazy colours etc., then post photos of their fun feet online to raise awareness of FOP.

Why feet?

An important early indication of FOP is malformed big toes at birth. This classic sign is often not recognised, due to lack of awareness. Misdiagnosis is common, which in turn can result in traumatic, unnecessary treatment, such as biopsies, surgery, and chemotherapy. These treatments aggravate FOP symptoms and cause the progression to accelerate.


How your company can help:

Step 1

Make a blog post for us and share on your social media platforms

Step 2

Raise awareness – wear fun feet to work on the 23rd April

Step 3

Do more.  Help us fundraise.

Wear fun feet to work for a small donation; Hold a #FunFeet4FOP Event;  Bake a cake…

How you can individually help:

Get involved:

Hannah Dempsey
Monday, 8 April, 2019 - 09:54

It's back! Now in its fourth year, #FunFeet4FOP is set to be bigger and better than ever. Snazzy socks, wacky wellies, pets in slippers, eye-catching pedis - it doesn't matter how you pose as long as you have fun feet & toes! Snap a photo of your funky feet & help those with FOP.

Why feet? 

An important early indication of FOP is malformed big toes at birth. Individuals with FOP normally have 'Turned in Toes'. This classic sign is often not recognised, due to the rarity of FOP and the lack of awareness of the common physical FOP symptoms. Misdiagnosis of FOP is common (53% of cases), which in turn can result in traumatic, unnecessary treatment, such as biopsies, surgery, and chemotherapy. These treatments aggravate FOP symptoms and cause the progression to accelerate. It's vital we raise awareness to prevent future diagnoses suffering. 

Get involved:

  1. Find your style and take a photo 
  2. Upload it to all your social media pages from April 1st with the hashtags: #FunFeet4FOP #CureFOP
  3. Tag three friends to take up the challenge 
  4. Tag FOP Friends and add the link to this webpage. Spread the word and raise awareness!

Go the extra mile and complete a #FunFeetFeat:  

  • Have a 'Guess Whose Feet?' Competition 
  • Do a Wacky Shoe Race
  • Go to Work/School in Flip Flops/Crazy Socks/Crazy Shoes
  • Host a Fun Feet Dance - put on your best dancing shoes
  • Get a Foot Massage 
  • Have a 'Fill the Boot With Money' Competition 
  • Complete a Firewalk 
  • •Bake and sell biscuits shaped like feet 
  • Hold a shoe/sock fashion shoe
  • Decorate your footwear - either real version or picture template
  • Sponsored sport in wacky footwear e.g., walk/run/football tournament 

What will YOUR feet wear? 

What is FOP?

FOP, Fibrodysplasia Ossificans Progressiva, is one of the rarest, most debilitating conditions known to medicine, where muscles, tendons and ligaments turn to bone eventually imprisoning the body in a second skeleton. There is currently no approved treatment or cure, and the average life expectancy is only 40-years-old.

Watch our video narrated by Stephen Fry 

About FOP Friends

FOP Friends, originally Friends of Oliver, was founded by Chris Bedford-Gay in 2009 after receiving the devastating news that his son, Oliver, had FOP. With FOP being so rare (only 55 known cases in the UK), at the time of Oliver’s diagnosis there was no UK charity dedicated to raising funds for research into effective treatments and a cure. Friends of Oliver was originally set up with the goal to fundraise amongst the Bedford-Gay's family and friends, and raise the £120,000 per annum that is needed to sustain the FOP research team at Oxford University. As these fundraising and awareness efforts began to build momentum, more families living with FOP began getting in touch and the charity grew. Due to the increasing demand to maintain the Oxford research team, and the realization of the need for vital support for UK FOP families, charitable status was pursued in order to apply for grants and boost donations. Despite the amount of paperwork required, this was selflessly completed, with Friends of Oliver evolving into FOP Friends, and becoming an official registered charity on 15th June 2012. 

International FOP Awareness Day

International FOP Awareness Day takes place every year on the 23rd April. This date marks the anniversary of the discovery of the FOP gene ACVR1. This research breakthrough was pivotal in improving diagnosis for FOP patients and progressing the search for a cure. Since the discovery in 2006, 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-ever clinical trials for FOP, from international pharmaceutical companies, Clementia and Regeneron. 


Hannah Dempsey
Friday, 5 April, 2019 - 12:56

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


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