FOP Action
Working to raise awareness and help find a cure for Fibrodysplasia Ossificans Progressiva (FOP). FOP Action was founded to offer a forum for advice and support to all those affected by FOP, creating a place to find out about helpful aids and equipment and to exchange views and ideas. Since the discovery of the FOP gene in 2006, finding treatments and a cure are a distinct possibility but we need help to support research. FOP Action is a working name of FOP Friends of Oliver a charity registered in England and Wales 1147704.
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Team Lighthouse's fundraising page

Ellie Tulloch, Rohan Beyts

My page:

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 What 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.

What 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.

Follow our progress on our Facebook Page - Team Lighthouse FOP Walk

Recent donors

04.10.14 Thank-you Ellie for suggesting this great adventure and letting me come on it. You are a wonderful child who should be very proud of what you achieved.

04.09.14 Fantastic Effort. Well done , sorry I'm so late.

03.09.14 Well done Rohan and Ellie - what an achievement!

23.07.14 A great achievement, a very worthy cause & an outstanding example of what our young people can do!

18.07.14 Thanks to Karen for £5.00 donation and Annette and Bob for £10.00 and Mae and Eric £ 10.00 We are all delighted with Ellies' epic walk for a very worthwhile charity

15.07.14 Well done Rohan and Ellie. Hope to see you next week Rohan! From Heather Mills

14.07.14 Congratualtions 'Elliemental'! Was lovely to meet you at the finish line and a kind surprise to see round Granny Rohan's lighthouse! May the light always shine on you and all the best in your future endeavours :o) Lots of hope to FOP Action too. x

14.07.14 Well done!

13.07.14 I've loved reading about this - what an inspiration both ladies are - well done. Fantastic memories made and for a good cause

13.07.14 well done

13.07.14 You must be (nearly) finished. Enjoy a drink in your lighthouse. Anke X

13.07.14 Well done Ellie, I have been following your walk on FB in NZ and am very impressed, what an awesome achievement!

13.07.14 Well done

12.07.14 what a fantastic effort a really big well done !!

12.07.14 Proud of both of you. Ellie you are a special girl, can't wait to see you. Lots of love mummy & daddy

12.07.14 What a fantastic effort for a wonderful cause. You should be immensely proud of yourselves

09.07.14 Well done Rohan and Ellie, what an achievement! You should be very proud of yourselves for going out and walking the walk. You are an inspiration to all. best wishes Viv

08.07.14 We really enjoyed our walk with you in Tentsmuir at the weekend. With some help from Freya's family and friends, here's the extra donation we promised you. Have a good long rest (and lots of chocolate, Ellie!) when you finally finish. Well done!

07.07.14 A great effort, well done.

07.07.14 Good Luck to you Both..


07.07.14 Well done


05.07.14 this donation includes £50.00.from grandma and grandad ,£20.00 each from Jill Grant and Derek and £10.00 from Maggie.Everyone is amazed at Ellies tenacity.

04.07.14 Fantastic effort Ellie and Rohan! Wishing you every success


Running total

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