Team Lighthouse (Ellie & Rohan): Raise £3930 for FOP

We would all like to thank a fantastic young lady Ellie Tulloch and her equally fantastic Gran, Rohan Beyts,who gave up two weeks of their summer holiday to raise money for FOP by walking from Edinburgh to Rohan’s lighthouse just outside Aberdeen, a total of 142 miles. They managed to raise an incredible total of £3930.TE-3  We can’t thank them enough and have included the words from them both on why they decided to do the walk.

TE-4What Ellie says about it

I first thought about walking to the lighthouse when I was visiting my granny (Rohan) at her lighthouse. It was a sunny day and I said to her that we should walk from my house (Ratho) to the lighthouse in summer 2014. She thought it was a good idea and agreed. We have decided to raise for FOP Action because my cousin Dylan suffers from FOP.

FOP is a disease that starts from the neck and works its way down to the feet, the body repairs itself with bone. People born with FOP often have a malformed big toe. Fop is very rare. All the research is funded by donations.

TE-2What Granny Says

I am very proud of my granddaughter. This idea of Ellie’s is very typical of her adventurous and generous spirit. She has always loved being outside so much so I have nicknamed her Elemental. She and Dylan are a similar age (he’s 12 and she’s 11) and as FOP is so rare the research is reliant on charity donations year on year. Previously we have climbed hills together, walked the Lairig Ghru and wild camped.  This 142 mile trek is a big challenge for us both but I know that she will be up to it. Our route will take us round the North Sea Coastal Trail. We will welcome other walkers if they want to join us for a day along the route. If you do just let us know. Our days will average 14-15 miles and there will be some rest days when we take time out to play on the Elie chain walk and visit the Bell Rock Lighthouse. We will be camping along the way.


Brilliant support from Tom and friends

Thank you to all our wonderful families, friends and colleagues for your amazing support and generosity for The Edinburgh Marathon to find a cure for Fop. Tom charged over the finish line after 3 hours 15 minutes. Pretty amazing for a first marathon. Thank you Imi for your brilliant support to Tom and a great day.

We are getting closer to a curevevery day. Sponsorship running at approx 1200. Just amazing. Still time to sponsor. With love and thanks Lucy, sheryll, Tom and Imi and Fop Action.xxxx

Good luck lads. Will, Jon, Mitch and Tom are driving an old Toyota Yaris 10,000 miles to Mongolia for charity.

 The lads are just putting together the final details for the rally. They will be setting off next weekend. If anyone would like to sponsor them for their very brave efforts to help FOP Action and all families within the FOP Community, please follow the link below. Very many thanks. Sheryll Hadley and Lucy xxxx

2014 FOP Conference & Family Gathering A Resounding Success!

Thank you to everyone who attended or was involved in making the 2014 UK FOP Family Gathering a great success.

Twelve years after the first ever UK event, FOP Action held a conference and family gathering for families from across the country and the globe. The event was organised by FOP Friends, the UK charity for FOP, headed by Chris Bedford-Gay. Assisted by a grant from Genetic Disorders UK, the aim of the event was to gather together families of FOP sufferers in a relaxed environment allowing them to meet others living with the same circumstances. The reality turned out to be much more.

After a year of planning, the event started in the early hours of Friday morning with Drs. Kaplan, Pignolo and Shore flying into Manchester, England. They ran clinical appointments all day long, meeting many patients, some who they had met previously, others new – all overwhelmed at meeting their ‘heroes’. The waiting area overlooked a sunny, yes sunny, Manchester Airport and the atmosphere was happy and hopeful. Behind the scenes, the FOP Friends team were busy getting ready for the evening’s meet and greet reception as well as preparing for the following day’s conference sessions. At 7pm, families gathered for the reception with attendees coming from, amongst other places, the UK, Sweden, Greece, Malta, the Netherlands and even South Africa and Australia. The hour-long reception ended when the bar closed three hours later!

Saturday dawned and the families gathered. A crèche was provided for the young children which proved to be a real hit! Staffed by qualified teachers, the children had a great time playing and meeting each other and particularly enjoyed the trips to the hotel penthouse to see the planes taking off! The crèche enabled the parents to enjoy the conference, taking the time to listen to the presentations and meet other parents to have great conversations. The presentations were given by doctors and researchers from the Universities of Oxford, England, and Pennsylvania, USA as well as IFOPA and Clementia Pharmaceuticals. Delegates had the opportunity to ask questions of all the speakers in the afternoon which was extremely well received. The families had different levels of understanding of FOP, depending on when they received a diagnosis, and the doctors and researchers were able to answer all questions. News of Clementia’s clinical trial provided real hope for the sufferers and their families, many hearing about this for the first time. The day was topped off by a dinner and quiz, which ended with an unexpected karaoke round, creating some fun competition – Dr Christiaan Scott from South Africa was the unexpected star of the night! There was no rest for Drs Kaplan, Pignolo and Shore who ran clinical appointments all day Sunday.

The feedback from the three day event was overwhelming with the most frequent comment being ‘When is the next one?’!  Lasting friendships were made and many delegates received support they didn’t know existed. Tears were shed and hugs were exchanged: the FOP community came together in spectacular style!

Latest fundraising

10371185_10202159327644968_4001283398048954739_oA massive thank you to fopfrance for another great donation of 5,000 euros. 35492_405401929548991_133753314_n Well done Rachel Winnard on raising funds by doing no make up selfie in your pyjamas fundraiser. People can still take part and donate on her virgin giving page Rachel’s family have also been very brave raising funds whilst in Australia. Well done Stephen Hopwood, Adam Calvert and Lauren Calvert on your sky dive. 10307419_10153072115480476_3065568453624978821_n 10294393_10153072114120476_4931520672074307596_n 10153883_10153072113520476_8180783993320917286_n-1 Lucy and Zoe with Dr Kaplan and Dr Pignolo at the recent FOP Gathering in Manchester. The girls farther Ian fretwell and friends Francis Mckendry and Jimmy Hamill recently raised a brilliant £5,000 by riding from the most Northern point of Northern Ireland to the most Southern point. Well done, we still have a long way to reach our target so we need all the help we can get. 10390129_10152049743041046_7276249616380810660_n Great awareness raised from the lovely little Annalese Gosling’s family in Wales. Please see the article One in two Million.     Good luck Tom and Lucy for running the Edinburgh Marathon this weekend please support them on the  Virgin giving page

Fundraising events


The largest donation this year is from FOP FRANCE. We really appreciate all the help that’s been given so far. As we all know raising funds is hard and with a condition as rare as FOP its a struggle each year to reach our target. FOP France have raised funds over the last two years.
Fundraisers include,
Brocante,”FOP cruise”,a pilgrim on the road to Compostela and a Drama – “President”

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Thankyou FOP France we couldn’t do it without you.


Rachel Winnard receiving a cheque from Scott Buckley at WM Rochdale lodge for £200. A massive thankyou to everyone that helped raise funds.

FOP ACTION is now registered with Virgin giving, making it really easy to fundraise. Please get intouch if anyone would like to help.
Ian fretwell and friends are raising funds, any support is really appreciated. Please visit

Ellie Tulloch and Rohan Beyts are also raising funds again any support is really appreciated.

Millies family and friends have worked so hard last year and up to now have raised a brilliant £4,425. Please visit to see upcoming fundraisers.

Looking forward to 2014

We have great news that even though we never reached our fundraising target last year the Research team will be unaffected. Together we raised a brilliant £106,039.77. This is due to Georgina from the Research team being on Maternity leave until after Easter and funding for this was found from elsewhere. So yet again the barometer is empty and we really need to keep the Research team working hard as we are getting closer to better treatments and clinical trials. We have had the continued support from FOP France and Friends of Oliver and many FOP families in the UK. As we all know though with FOP being so rare its really hard for families to keep fundraising each year. Any support is really appreciated and please get in touch if we can help in anyway.


Jasmine is now 7, She still loves playing with her babies and Barbie’s but now loves her ipad. She is doing well at school and has some lovely friends. The last few years have been really good for her but since Christmas she has suffered from a few flare ups. We are hoping her FOP calms down soon with no new restrictions and she is feeling herself again soon. She is a determined little girl and recently learnt to put her own top/dress on herself. Since her shoulders locked when just nearly two she has always needed help. We are looking forward to meeting everyone at the upcoming Symposium especially all the brilliant Researchers who are working hard to help. Even a pharmaceutical company Clementia will be attending so we are hoping to hear about some possible future clinical trials. Jasmine probably wont take part in these trials as children probably wont be included. We will keep everyone updated with any new news.

We would like to thank Ami Ford who held a brilliant three hour Zumbathon to raise money for Research, we really appreciate it and know it took a lot to organise. She raised a brilliant £1645.80. Thanks to everyone who took part and helped out, everyone did really well especially the children that took part.1469785_1480293648861988_1388922891_n

I would like to thank everyone at Miss Toni’s Academy where Sienna and Jasmine go to a performance arts class. At the show before Christmas a raffle took place to raise funds for Research and a brilliant £300 was raised. The night was brilliant and Jasmine did so well singing her first solo.

Jasmine on the front row , fourth from the left.

Also thanks to everyone who didn’t send Christmas Cards and donated instead.

Looking forward to the rest of 2014 and wish everyone a happy and healthy 2014. Best Wishes Kelly mum of Jasmine.

Autumn report from the Oxford FOP Research team.

Its great to get a regular update from our research team in Oxford. The future is looking hopeful for FOP sufferers but much needed funds are still needed. Please see the following report.

Autumn 2013 Report

About Millie

Hello my name is Millie I am 3, I live in Framlingham, England. I have a big brother Ethan and he makes me giggle often. I love Peppa Pig and Minnie Mouse. I go to nursery every morning where I love playing with all my friends. I love to run around and play chasing games outside but now I just have to be more careful and try not to fall and bump myself. Everyone thinks I am a smiley little girl and I am determined to stay that way.

Millie has very recently been diagnosed with Fibrodysplasia Ossificans Progressiva and her family really want to help raise much needed funds for Research at Oxford University. Please take a look at her giving page

2014 Conference & Family Gathering


FOP Action invites you to the 2014 FOP Family Gathering. The event will take place in Manchester, UK at the Radisson Blu Airport Hotel. The main event takes place on Saturday 17th May with pre-booked clinical appointments available Friday 16th, Saturday 17th (afternoon), and Sunday 18th May.

World renowned FOP experts will be in attendance, presenting the latest on FOP research, the search for treatments, a cure and the path to clinical trials.The event will include: clinical appointments, presentations, workshops, evening meal and light entertainment.

Childcare will be provided where possible. Children attending with an adult are free.

Booking Details

More great fundraisers from Head shaves to 500 mile walks

The Scott Family and everyone else that supports FOPACTION would like to say a massive thankyou to everyone who took part in the 500 Mile Scottish parliament walk and a special thanks to Mary Hershaw who organised it. It raised a great £500 for FOP Research


Amazing ways to fundraise, well done Rachel for shaving your hair it really suits you. A big thanks to Mark Holleran for getting his chest waxed, it looked very painful. The family would like to thank everyone involved and raised a brilliant £1,000.

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