- What Is FOP
- FOP Friends
- You Can Help
- FOP Video
Thank you to everyone who attended and contributed to making the second Conference and Family Gathering a resounding success. We were delighted to welcome so many families, researchers and clinicians to the Radisson Blu Airport Hotel, Manchester for a weekend of learning, sharing and developing lasting friendships with others who are, in one way or another, part of the FOP community.
Although the main event was on Saturday 21st May 2016, our dedicated FOP clinicians were in Manchester from Thursday through to the Sunday, holding clinical appointments with patients all day - besides Saturday morning when they were presenting at the conference! Professor Fred Kaplan, Dr Robert Pignolo and Dr Richard Keen led the appointments and welcomed other clinicians to prompt interest and learning into the medical aspects of FOP – perhaps inspiring the FOP heroes of the future!
Families, researchers and clinicians came together in style on the Friday night for a meet and greet reception. People travelled from all around the UK and further afield. Eleven countries were represented including Finland, Sweden, and as far as South Africa and Australia! This meeting was the first time that many of the FOP community had seen each other since the 2014 event and there was an overwhelming feeling of togetherness and excitement for the weekend ahead.
Saturday morning came and delegates - families, researchers and clinicians - gathered in the conference room for a 9am start. Young children attended the crèche for a fun-filled day which included building crazy robots and making their own jewellery.
The morning delivered information on the latest research progress made in the search for treatments for FOP, with presentations from world renowned FOP experts and pharmaceutical representatives. At lunch time, the children joined their parents and all 104 delegates came together for a group photo in the foyer, before tucking in to some great food.
The afternoon session included an update on the FOP natural history study, information on the FOP connection registry and a talk from a Great Ormond Street Hospital paediatric dentist with experience treating FOP patients.
Later in the afternoon, families were invited to take part in three workshop sessions. The Genetic Counselling and Neuro Linguistic Programming workshops offered delegates the opportunity to interact with specialists in these topics, ask questions, share experiences and explore their options for support. The Meet the Scientists workshop allowed families to ask any outstanding questions to the researchers who are working tirelessly to develop treatment options for FOP. More information on the day’s programme can be seen below with links to conference presentations.*
The conference came to a close at 5pm, but the event was far from being over! Families gathered at the bar from 7pm, followed by an evening dinner and quiz. The ‘sing that tune’ quiz round was once again very popular and revealed some hidden talents! Despite healthy competition for the winner’s bottle of Prosecco, the atmosphere was fun and friendly! It was lovely to see so many of the children spending quality time together in the evening after making friends at the crèche; having dinner, dancing and joining in with the ‘Whose Fun Feet?’ quiz.
Sunday dawned and there was no rest for Professor Kaplan and Dr Pignolo who led clinical appointments all day. Dr Keen had an especially busy Sunday, seeing patients in the morning before going the extra mile to run the Great Manchester 10k, in aid of FOP Friends, along with his daughter.
We are delighted at the success of this event, which has once again encouraged a positive stance towards finding effective treatments for FOP. The FOP Friends team feels privileged to be part of such a strong and caring community and are overwhelmed by the feedback received following the event. Thank you, one and all.
Professor Fred Kaplan and Dr Robert Pignolo of the University of Pennsylvania began the day’s presentations by providing the background behind What is FOP? The Science for non-scientists and leading a dynamic Q & A session where delegates were able to raise any initial questions. Professor Eileen Shore, also from the University of Pennsylvania then introduced talks on the foundations for future treatments and How do we fix FOP?
Presentations by Dr Alex Bullock, University of Oxford, Dr Paul B. Yu, Harvard Medical School and Lorraine Webber, AstraZeneca R&D followed to cover the potential of kinase inhibitors as a treatment option for FOP.
Dr Donna Grogan of Clementia Pharmaceuticals expanded on How do we fix FOP, with up-to-date information from the Clementia Clinical Trial. To close the mornings session, Dr Aris N. Economides and Dr Xiaobing Qian, both of Regeneron Pharmaceuticals presented their research on Activin as a potential target for FOP treatments.
Dr Richard Keen of University College Hospital, London opened the afternoon session with an Update on the FOP Natural History Study. (Please note, as the study is not yet complete, we are not able to share this presentation.) We then heard about progress being made with the FOP Connection Registry with a presentation by Neal Mantick of the IFOPA.
Next came a talk from Dr Gehan Abou-America, Consultant in Paediatric Dentistry, Great Ormond Street Hospital who addressed the issues with dental procedures for FOP Patients, before holding a session with the children at the crèche on the importance of good dental health.
Presentations were rounded off by the FOP Friends team with an update on our work and suggestions of ‘How you can help’. This highlighted some of the fantastic fundraisers held by our supporters and we showcased some new fundraising ideas to help raise money to continue funding the search for treatments. This was a great opportunity to celebrate our fundraising success so far and to thank the FOP community for their amazing efforts to date. For those of you who might have been inspired to organise your own fundraiser, remember that we would love to hear your ideas. We can also provide you with our ‘Whose Fun Feet’ quiz for you to use at any fundraising event with a quiz element in future – or just to test your family and friends at home!