FOP Friends' 2016 Round Up

FOP Friends' 2016 Round Up

For FOP Friends, 2016 was a very exciting year! We saw the advent of our new quarterly newsletter Together and celebrated the 10th anniversary of the ACVR1 gene discovery with our #FunFeet4FOP campaign. The second FOP Friends Conference also took place, welcoming over 100 delegates, and bringing together the FOP community in style. 

Research into FOP has continued to make great progress. Once again, FOP Friends, FOP Switzerland, and FOP France commited to help fund the Structural Genomics Consortium (SGC) research team at the University of Oxford. We can now announce that we have successfully supported the team for a further year in 2017, having reached our 2016 fundraising goal. 

The FOP Connection Registry also successfully reached its first-year milestone in July, so far attracting 178 patients from 28 different countries. Biotechnology company Regeneron's clinical trial began in June investigating the Anti-Activin A antibody in humans. While, pharmaceutical company Clementia extended its phase 2 study of palovarotene having found positive trends in reducing bone formation in FOP sufferers and wanting to investigate this finding further.

Additionally, we were very fortunate to receive a grant from BBC Children in Need to fund a weekend away at Centre Parcs for children affected by FOP. This will take place in March of this year and all the children are really looking forward to it!

None of this would have been possible without our great supporters who ran, cycled, and swam all to raise funds and awareness for FOP. Some got muddy, while others completed their event on the hottest day of the year! Twenty-two of you took part in this year's Great North Run and even the little ones came out in force with sponsored haircuts, toy sales, and fun runs!

Thank you to every single one of you who has supported FOP Friends on this journey to find a treatment and a cure for FOP. Here's to 2017 being an even greater year with even more fund and awareness being raised!

Hannah Dempsey

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