FOP Friends - 2017 Round-Up

FOP Friends - 2017 Round-Up

The past year has been packed with exciting advancements and opportunities for FOP Friends and the FOP community. 

Clinical trials have been advancing globally. Clementia are currently recruiting for their Phase 3 Palovarotene Clinical Trial where participants will receive daily, oral dosages of Palovarotene, in order for the researchers to establish the effectiveness of the dose amount on reducing bone growth in the body. Regeneron has also announced that they are recruiting for their LUMINA-1 Trial, with clinical sites both in the UK and USA. Half of the participants will receive a powdered solution injection of the anti-Activin-A antibody, while the other half will receive a placebo injection. This antibody has already shown to be effective in reducing bone growth in mice so this trial with FOP patients could be very promising. Finally, the IFOPA is still recruiting participants for the FOP Connection Registry. This is a worldwide database capturing demographic and disease data from FOP families. Our trustee, Nicky, explains why it is so important to get involved with the Registry. 

As a charity, we had some exciting acknowledgments. Chris and Helen received a letter from 10 Downing Street for all the time and effort they have dedicated to the FOP community. They also attended Oxford University's Vice Chancellor Circle evening, having been invited as a thanks to all the support we, as a community. have been able to give to our FOP Research team at Oxford. Additionally, Chris, Oliver, and FOP Friends received a mention in Fiona Cummins' debut novel 'Rattle' because Chris consulted on the book as one of the main characters suffers from FOP. We were also so please to come Runner Up in the Sale and Altrincham Chamber of Commerce Awards 2017 for Charity of the Year, which was kindly sponsored by MLP Law, and we had the chance to meet some great charities and businesses at the Awards Evening.

Our first Family Weekend Break Away to Center Parcs took place in 2017, thanks to a generous grant from Children in Need.  This weekend away provided a brilliant opportunity for families, with children living with FOP, to catch up with one another and take part in a variety of activities in a safe environment, such as swimming, pottery, and an evening group meal. We also had the opportunity to attend University of Manchester's Volunteer Fair and connect with local students, while Chris attended the IFOPA and FOP Italia Drug Development Forum, which was held in Italy for the first time. 

Our year would be nothing without the amazing support from our fabulous fundraisers! They dressed up as Santa’s and Superheroes. They trekked 800 miles and jumped from 800ft. They ran, swam, cycled, and took up so many personal challenges to raise funds and awareness for FOP. Our young supporters came out in force with sweet stalls, colour runs and toy sales, while Gig4Isla celebrated its fourth year and the Whitly Bay line dancers celebrated raising a staggering £30,000. Check out our quarterly newsletter, Together (now in its second year), to read more about all our fundraisers' exciting challenges.

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 2018 being an even greater year! We have so much to look forward to including #FunFeet4FOP day, the biennial Family Conference and Gathering, and further clinical research progression. As a community, we are stronger together and hopefully we continue to grow this year.

Make sure to follow us on Twitter and Facebook to keep up-to-date with all our news.

Hannah Dempsey

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