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Climbing Kili for a Cure for FOP!

Sinead Nammock

My page:


Fibrodysplasia Ossificans Progressiva (FOP) is an extremely rare and disabling genetic condition. It is where bone grows on muscle, tendons and tissues occuring from the tiniest knock or any kind of trauma. My sister Seanie Nammock (16) is one of approximately 35 sufferers in the UK. It has already affected her neck/shoulders and her arms are locked across her stomach where bone has already grown. As the name suggests, it is progressive and could spread down her body disabling her further. In the media it is called the disease that turns people to stone - not a very nice description but that is basically what it does. 

There are only 700 diagnosed cases worldwide and there is no cure or medication to halt this condition at present. Because it is so very rare there are no government funds given for research, therefore it is really down to friends and families of the people affected to fundraise. Since Seanie was diagnosed our family and friends have raised approximately £60,000 through various events that we have held, and this was sent directly to Oxford University. To enable the current ground breaking research to continue, we need to raise £120,000 every year. Led by Professor James Triffitt, Dr Alex Bullock and their team, Oxford is one of the few institutions in the world conducting research into FOP. In 2006, they played a vital role in the discovery of the gene that causes the disease. This was a huge step forward in understanding how FOP occurs, but it’s only half the battle. They are now searching to not only slow the symptoms of FOP, but also to find a cure. Such a cure would not only help all patients with FOP by shutting off the faulty gene - it would also offer a possible cure for Osteoporosis sufferers, military post trauma cases and post-operative heterotopic bone growth.

I am currently preparing to climb Mount Kilimanjaro this August, covering my own expenses so all monies raised go directly to FOP medical research.

FOP is known as the 'Mountain of all genetic diseases', so I thought what better way to attempt to conquer FOP than by conquering the highest mountain in Africa! I will also be organising various other fundraising events leading up to the trek, including the London Bupa 10k run, and will update this page as and when they are taking place :)

Seanie and all other sufferers of FOP are an absolute inspiration to us all, and the hardwork carried out at the research centre at the University of Oxford enables us to hope that one day a compound will be developed to halt any further disabling bone growth, potentially leading to a cure.

I would just like to take this opportunity to thank you very much for visiting my fundraising page and for your continued support, not only for this event but over the past few years since Seanie's diagnosis. We are closer to a cure than ever, with even the smallest of donations making the biggest difference. This makes the potential closure of the research centre all the more devastating after all their progress and unbelievable dedication to finding a cure for FOP and support for its sufferers. You can find out more information and news on Seanie and others affected by FOP by visiting

Alternatively, if you would like to donate via a cheque, it can be made payable to:

'The University of Oxford FOP Research Fund'

and addressed to:

Louise Angelou, Senior Campaign Executive,

Medical Sciences, University of Oxford Development Office,

University Offices, Wellington Square,

Oxford OX1 2JD.


Thanks for supporting my 'Climbing Kili for a Cure' expedition to raise funds for the Oxford University FOP Research Fund!

Recent donors

24.12.13 i heard about this disease and the fundraiser through John Cawley, Seanie's cousin in Australia.

11.10.13 Well done all of you, will send more in a few weeks.

21.09.13 Thank you Brendan for your kind donation

15.09.13 Well done for getting to the peak Sinead. Hope all's going well in America.


06.09.13 Congratulations for completing the climb :)

06.09.13 Thank you so much Caroline, Margaret S gave me your donation.


16.08.13 Well done lots of lovexx Mum of Jessica who has FOP.

15.08.13 Congratulations on a job well done x


12.08.13 I wish you and your sister well x

11.08.13 Well done hun! What a great achievement and what an amazing amount you've raised for such a worthy cause. Please god they find a cure soon xxx

11.08.13 Well done Sinead.. Incredibly courageous and inspiring.

11.08.13 Congratulations on making it on the top of Mt Kilimanjaro: that shows huge grit and determination. Hope you're enjoying a well-earned rest post climb.

11.08.13 Good luck. You are doing a wonderful thing.



05.08.13 Good Luck Sinead!!

05.08.13 Good luck with your fundraising - With very best wishes - Lidgate Butchers - Holland Park

04.08.13 Thank you James Price for your donation, your donation means a lot to our family.


03.08.13 The very best of luck raising the money you need.

01.08.13 Good luck sinead!! What a credit you are to your mum dad and sisters! All the best with the climb and be safe! Take care!x paul, Chanelle, Sonney and teddy oatway!xx

01.08.13 Good luck sinead love Rachel Hopwoods family xxx


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