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FOP Friends Blog

'Points of Light' are outstanding, individual volunteers - people who are meaking a change in their community. Every weekday, the Prime Minister recognises an inspirational volunteer with the daily 'Point of Light' award. 

First established by President George H. W. Bush in 1990, over 5,000 US Points of Light have been recognised in the USA. UK Points of Light was developed in partnership with the US programme and launched in the Cabinet Room at 10 Downing Street in April 2014.

Since then, hundreds of people have been named Points of Light by the Prime Minister, highlightnig an enormous array of innovative and inspirational volunteering across the length and breadth of Britain. 

Follow the link to read comments from Helen and Chris, and Prime Minister Theresa May: https://www.pointsoflight.gov.uk/fop-friends/

Hannah Dempsey
Tuesday, 30 January, 2018 - 11:50

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
Wednesday, 3 January, 2018 - 12:09

On May 14th 2017, thirteen of our fantastic fundraisers descended on Regent's Park in London to take part in the annual DIFC Superhero Fun Run. Dressed head to toe in snazzy superhero clothes, with Wonder Woman and Batman making appearances, our runners completed the fun run course in style. Our superheroes managed to triple their original fundraising target, collectively raising an impressive £3,200 and this is still increasing! 

A massive congratulations and big thanks to everyone who took part in this challenge. FOP Friends is very grateful for all the support on this journey to find treatments/a cure for FOP.

Hannah Dempsey
Wednesday, 3 January, 2018 - 11:38

With International FOP Awareness Day taking place, our #FunFeet4FOP campaign was in full swing and it was a massive success. The FOP community, from across the world, rallied round and posted their funky feet and fancy footwear, raising lots of awareness for FOP. Check out our gallery to see some of the fabulous photos. 

Also on the day, William and his friends, aged just 10 years old, were out in force raising awareness and collecting donations from the Ramsbottom community by setting up a fundraising stall in their local Morrisons supermarket. Having previously raised almost £300 by completing the 2016 Bury Family Fun Run, and just under £400 by setting up a sweet stall at Ramsbottom Farmers' Market this March, William has fast become a prominent fundraising champion for the FOP community. Well done, William and friends!  

Further down south, we also saw on Jack and Jo complete 26.2 miles respectively. Jack ran the Southampton Marathon while Jo took part in the London Marathon. Collectively, they raised over £2500 for FOP Friends and the FOP community. Thank you so much for your efforts and support, Jack and Jo! 

Overall, Sunday 23rd April was an amazing day filled with fantastic fundraisers and super supporters who raised so much awareness for FOP and the FOP community. 

The great effort did not just stop after that Sunday though. Just a week later, on Sunday 30th April, we saw Sheryll, Cate, and Howard take part in the Hackney Half Marathon raising over £2250 for FOP Friends! While Sheryll admitted she was not a runner, she overcame the challenge and was fantastic at fundraising for the FOP community.

To all our fabulous fundraisers and supporters, thank you so much for the continued effort you put into raising money and awareness to hopefully, one day, find treatments/a cure for FOP. 

Hannah Dempsey
Wednesday, 3 January, 2018 - 11:45

The #FunFeetForFOP campaign is now in its second year with last year being a great success - people wore wacky shoes/socks, had funky feet, and posed in crazy locations. An animal or two even got involved!

Why Fun Feet? Well, an important early indication of FOP is malformed big toes at birth. This classic sign is often unrecognised due to lack of awareness of FOP and the symptoms, leading to misdiagnosis (often of cancer).  

 Every week we have been posting a variety of #FunFeet4FOP photos on our Twitter and Facebook pages. Check them out, give us a like, and share some of the ones you find the funniest! 

Here are 4 simple steps to get involved:

Step 1

Tell your friends, family, colleagues...everyone and share the link to this webpage.

Step 2

Find your style and take a photo! Ideas include: Wearing snazzy socks, wacky wellies, bizarre boots. Get creative with an eye-catching pedicure, or take a snap of your pet in slippers! You could even hold a Fun Feet Day at the office, or a Flip Flop Day, asking participants to donate, with proceeds going to FOP Friends.

Step 3


Upload your photos on social media along with the hashtag #FunFeet4FOP. Be sure to tag FOP Friends on Facebook and Twitter and add the link to this website page. 

Step 4

Share your social media posts with friends and followers - tag five friends (one for each toe!) and get them to join in with the campaign - and include details about how to donate to FOP Friends:

Text CFOP00 £20 (or any other amount) to 70070 oDonate Online via Virgin Money Giving here. You could even set up your own fundraising page on Virgin Money Giving. 

If you have any questions or would like some more ideas, please contact us. We will be running a competition for the best post - so be creative! We can't wait to see what you come up with.     

Hannah Dempsey
Wednesday, 3 January, 2018 - 11:52

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