2014 Conference & Family Gathering A Resounding Success!

Chris Bedford-Gay's picture

2014 Conference & Family Gathering A Resounding Success!

Thank you to everyone who attended or was involved in making the 2014 UK FOP Family Gathering a great success.

Twelve years after the first ever UK event, FOP Action held a conference and family gathering for families from across the country and the globe. The event was organised by FOP Friends, the UK charity for FOP, headed by Chris Bedford-Gay. Assisted by a grant from Genetic Disorders UK, the aim of the event was to gather together families of FOP sufferers in a relaxed environment allowing them to meet others living with the same circumstances. The reality turned out to be much more.

After a year of planning, the event started in the early hours of Friday morning with Drs. Kaplan, Pignolo and Shore flying into Manchester, England. They ran clinical appointments all day long, meeting many patients, some who they had met previously, others new – all overwhelmed at meeting their ‘heroes’. The waiting area overlooked a sunny, yes sunny, Manchester Airport and the atmosphere was happy and hopeful. Behind the scenes, the FOP Friends team were busy getting ready for the evening’s meet and greet reception as well as preparing for the following day’s conference sessions. At 7pm, families gathered for the reception with attendees coming from, amongst other places, the UK, Sweden, Greece, Malta, the Netherlands and even South Africa and Australia. The hour-long reception ended when the bar closed three hours later!

Saturday dawned and the families gathered. A crèche was provided for the young children which proved to be a real hit! Staffed by qualified teachers, the children had a great time playing and meeting each other and particularly enjoyed the trips to the hotel penthouse to see the planes taking off! The crèche enabled the parents to enjoy the conference, taking the time to listen to the presentations and meet other parents to have great conversations. The presentations were given by doctors and researchers from the Universities of Oxford, England, and Pennsylvania, USA as well as IFOPA and Clementia Pharmaceuticals. Delegates had the opportunity to ask questions of all the speakers in the afternoon which was extremely well received. The families had different levels of understanding of FOP, depending on when they received a diagnosis, and the doctors and researchers were able to answer all questions. News of Clementia’s clinical trial provided real hope for the sufferers and their families, many hearing about this for the first time. The day was topped off by a dinner and quiz, which ended with an unexpected karaoke round, creating some fun competition – Dr Christiaan Scott from South Africa was the unexpected star of the night! There was no rest for Drs Kaplan, Pignolo and Shore who ran clinical appointments all day Sunday.

The feedback from the three day event was overwhelming with the most frequent comment being ‘When is the next one?’!  Lasting friendships were made and many delegates received support they didn’t know existed. Tears were shed and hugs were exchanged: the FOP community came together in spectacular style!


Chris Bedford-Gay

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