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FOP Friends Blog

What a wonderful weekend it was, not only was there a Royal Wedding and an FA Cup Final but we also hosted our 2018 FOP Friends Conference and Family Gathering! Over 120 delegates descended on the Radisson Blu Airport Hotel, Manchester, to celebrate a day of connecting, conversing, sharing, and learning. We had amazing talks from the world's leading FOP experts, and we were treated to engaging afternoon workshops, which included an inspiring speech from Chloe and her assistance dog, Ted. The day was rounded off with the Family Dinner, which saw everyone come together to dance and sing the night away.

The weekend was a massive success, with the UK FOP community coming together in style - we are so grateful to everyone who attended!

Watch this space  as we're just waiting on the photos to come and we will post the conference programme for those who missed out or for those who want to relive the day! 

Hannah Dempsey
Wednesday, 23 May, 2018 - 17:38

FOP Friends would like to invite you to the third UK Conference and Family Gathering 2018.  This will be held again at the Radisson Blu Airport Hotel, Manchester. Booking closes soon. 

We are delighted to announce that Professor Fred Kaplan, Professor Robert Pignolo, along with Dr Richard Keen from RNOH will be attending, along with other internationally respected FOP experts.

This year’s main theme will be living with FOP, with a clear focus on patients and families.

There will be presentations from our world-renowned FOP experts along with representatives from the pharmaceutical companies who are at the forefront of FOP research.  Complications FOPers face with regard to their dental health will also be addressed by Dr Gehan Abou-Ameira from GOSH.  Attendees will also be able to ask questions during a Q&A panel session.

In the afternoon, there will be workshop sessions to provide an opportunity for families and FOPers to break off into groups and discuss topics of relevance to them.  The workshops will be guided by facilitators to enable attendees to get the most out of the sessions.

Clinical appointments will be available for FOPers, and led by Professor Kaplan, Professor Pignolo and Dr Keen.  Taking place over three days, appointments will give patients the opportunity to consult with the physicians privately. 

Childcare, and a quiet space for young adults, is provided to enable parents to participate fully in the day. 

There will be a family dinner in the evening with light entertainment provided.  This is an informal and fun affair where parents can relax together and simply enjoy each other’s company. 

We have been lucky enough to secure a grant from the Big Lottery Fund (National Lottery).  This means that patients, their main carer, parents and siblings can benefit from a generous discount of 50%, freezing the cost to 2016 prices. For more information, click here 


Book online now: CLICK HERE

Hannah Dempsey
Wednesday, 25 April, 2018 - 11:17

International FOP Awareness Day 2018 takes place on April 23rd and we want as many people as possible to get involved with our #FunFeet4FOP campaign to raise lots of awareness for FOP. 

Snazzy socks, wacky wellies, pets in slippers, eye-catching pedis - it doesn't matter how you pose as long as you have fun feet & toes! Snap a photo of your funky feet & help those with FOP.

Why Fun Feet? 

An important early indication of FOP is malformed big toes at birth. This classic sign is often not recognised due to lack of awareness of FOP. This may lead to misdiagnosis (often of cancer), which in turn can result in traumatic, unnecessary treatment that aggravate the symptoms.

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

We'll be 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! 

Share your own 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! 

Hannah Dempsey
Tuesday, 10 April, 2018 - 10:59

We are pleased to announce that the FOP Friends 2018 Conference and Family Gathering is ready to take bookings. 

The conference will take place at the Radisson Blu Manchester Airport on Sat May 19th with clinical appointments available 18th, 19th (afternoon) and 20th.

More details are available here. A full agenda will be available shortly.

Watch our 2016 conference video here.

Thanks to generous support we have been able to maintain a "better than half price" cost to attend for FOP (and POH) Patients and Families.

If you are booking extra nights at the hotel, please remember to tell them you are attending the Conference so they can link the two bookings together.

The FOP Friends team










 

Hannah Dempsey
Tuesday, 6 February, 2018 - 14:53

 

Hannah Dempsey
Tuesday, 30 January, 2018 - 13:18

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