News

FOP websites and blogs

Here are some FOP websites and blogs from different people around the world.
shane terry a 5 year old boy who was diagnosed with FOP in may 2008
http://www.weldonfop.org/ A website all about Whitney weldon a 17 year old girl who was diagnosed at 9.
Bingo for a cure A website for 3 year old Josh Scoble who was diagnosed at 3 months.
Hayden’s Hope A website for Hayden Pheif a 10 year old boy who was diagnosed when he was 2.
Crooked Guy A blog about Nick Mahler about his adventures in life and living with FOP.
Friends with FOP A blog about the lives of two young girls with FOP Erin Kate and Miranda.
A bio about Jud Bogard
FOP sverige This is the Swedish FOP website but has alot of information and pictures of a young boy Hugo

Fat and muscle turned into bone and cartilage.

The following article Fat and muscle turned into bone and cartilage is about a study where a virus with the fop gene was purposely introduced into bone fractures in rats. Apparently it helped the fracture healing.

Nineteenth Annual Report of the FOP Collaborative Research Project now available.

Please see the report on the International Fibrodysplasia Ossificans Progressiva Association website.

Well done to all the guys who took part in the West Highland Way Run

Well done to the guys who managed to complete the route in 23 and a half hours. It was a great day and the weather was kind to them, everyone was in good form and ready for the challange. The runners and cyclists put in a great effort but not to forget the drivers who had the unenviable task of driving hundreds of miles, often through roads many of them never knew existed.
Start of West Highland Way Challenge 2010

West Highland Way 5 May 2010
Its brilliant to see all the guys wearing the fopaction t-shirts it so important to raise awareness for such a rare disease.
The guys have raised £2266.40 so far and are confident to bring it up to £3,000.
newspaper clippings 2 001

Luciana’s Walk

In July 2010 I Nicola Morris from Blackburn Lancashire, and my father Keith Morris from Blackpool, Lancashire, will both be walking the highest free standing mountain in the world. Mount Kilimanjaro, standing at breathtaking 19’340 ft (5895 metres). By doing this we aim to raise as much money as possible to fund further research into a rare genetic condition known as Fibrodysplasia Ossificans Progressiva (FOP). Why? At the beginning of 2008 I came to meet a young girl called Lucian Wulkan, Luciana lives with her family in Lancashire and suffers from FOP. From the day I met Luciana I wanted to do something to help. Luciana is a cheeky and ambitious 11 year old and in my eyes a strong and courageous child. FOP is a condition that causes muscle and connective tissue to turn to bone, therfore Luciana is unable to carry out day to day tasks that we take for granted. The most heart wrenching thing is very few people are aware of this condition, so as well as raising money for research I want to raise awareness too. Please check out my website www.lucianaswalk.com where you can keep upto date with my training progress, view the gallery and much more.

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to sponsor me: Nuffield Orthopaedic Centre Appeal gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation.

So please sponsor me now!

The campaign for the University of Oxford. Supporting research into Fibrodysplasia Ossificans Progressiva (FOP).

Please see the following General report
It includes current research projects, future direction and goals plus income from donations.

10 mile run for FOP research

Well done to Sheryll Hadley and friends for taking part in a ten mile run to raise money for Oxford FOP research.
They raised a brilliant £1,080.

FOP bear ready for the challange

fopBear

Here is a picture of the little bear who will travel the whole 96 miles of the West Highland Way tomorrow.
Good luck to everyone taking part.

Louise Wedderburn tells of donor delight

A girl with a disease that is turning her into a ‘statue’ has praised a kind-hearted donor who forked out £330,000 to find a cure. Louise Wedderburn, 16, was diagnosed with rare FOP – Fibrodysplasia Ossificans Progressiva – aged just three. It causes the teenager, of Fraserburgh, Aberdeenshire, to grow what is almost a second skeleton, locking her limbs like a statue and crushing internal organs. But businessman Richard Simcox, from nearby Banchory, has ‘forked out the huge sum on research at Oxford University. Thanks to his support they hope to find a cure within four years.’

Donation enables research into FOP -University of Oxford

Please see the following news

Listen to Marian, mum of Seanie with FOP on BBC radio Oxford on the Malcolm Boyden show.Marian talks after the first 30 minutes.

More news from Oxford University

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