News

The woman, not the mask.

http://www.ocregister.com/articles/-295441–.html#article-comments

09 May 11 Articles 0

Thankyou Jamie

Jamie who is a friend of Rachel Winnard who suffers from Fibrodysplasia Ossificans Progressiva ran the London Marathon to raise much needed money for FOP research.

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26 Apr 11 Fundraising 0

Bound By Hope: One Family’s Story

Watch four year old Josh Scoble and his family in this Video.
The Scoble family have done so much to raise awareness and funds for research in the US. Little Josh you are amazing.

06 Apr 11 Faces of FOP, General 0

Exciting New Research Update

Please see the following link news-releases
More information regarding this release will be in the April 7th release of the 20th Annual Report Collaborative Research Project and also an editorial in Nature Medicine by Drs Kaplan and Shore which will be available on the IFOPA website.

04 Apr 11 Articles, Research 4

Barclays FOP fundraiser

Nammock fundraising update

Last April myself Seanie and Louise Angelou from Oxford University had a meeting at Barclays Bank in Canary Wharf London where they agreed to take on FOP Research at Oxford University for one year. Throughout the year the Charity committe held various functions and raised £6232.00 and there is still some more monies to come. The total of monies raised was divided between 6 charities.

We collected the cheque this evening along with Professor Jim Triffit who conducts the research into FOP at Oxford University and Louise Angelou who is the Senior Campaign Executive for Medical Sciences at Oxford University.

Marian
BARCLAYS 4 29TH MARCH 11
BARCLAYS 2 29TH MARCH 11

30 Mar 11 Faces of FOP, Fundraising 1

More awareness raised as three year old Oliver in The Advertiser

Please see the following link Three year old Olivers condition turns his muscle into bone.

29 Mar 11 General 1

New website for little Oliver.

Chris and Helen have created a fantastic new website to celebrate all the amazing things friends and family are doing to help Oliver and other people affected by FOP.

Please see the website www.friendsofoliver.com to see everything thats been happening to raise funds and to find out about upcoming events.

11 Feb 11 Faces of FOP, Fundraising 0

Matt Horrick on Mystery Diagnosis

Please see the following link The answer was right at his feet.

Thank you to Matt and his family for sharing your story and raising much needed awareness. Please help us raise awareness and help stop Fibrodysplasia Ossificans Progressiva patients from undergoing unnecessary treatments like Matt. There is a fop facts leaflet that can be downloaded from this website that would be useful.

09 Feb 11 General 0

A scientist and his zebrafish offer the best hope for a cure for a rare and disabling bone disease

Please see the following link about new research http://www.mc.vanderbilt.edu/vanderbiltmedicine/index.html?article=10015

07 Feb 11 Faces of FOP, Research 0

Today’s kids in Motion – A Canadian magazine about kids with disabilities features FOP.

Please see the following link My article about FOP

Well done Karen, Miranda and family. Its great to raise awareness but its also so helpful to share your everyday life experiences and the obstacles you face.

26 Jan 11 Articles, Faces of FOP 0

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