On 23rd April, the whole Skillsarena team will all be wearing flip-flops to the office to raise awareness of the genetic disorder fibrodysplasia ossificans progressiva, or FOP. It's #FunFeet4FOP day! This ultra-rare genetic condition affects just 1 in 2 million people. Over time, people with this condition develop extra bone which imprisons them in a second skeleton. It is a painful and debilitating disease for which there is no treatment or cure. FOP Friends is a small charity that is close to our hearts.
FOP Friends story:
In 2009, Chris and Helen Bedford-Gay received the devastating news that their first son, Oliver, who was then just one, had been born with Fibrodysplasia Ossificans Progressiva (FOP). Following Oliver’s diagnosis, they began researching the condition to find that FOP was such a rare disease that there was no charity in the UK dedicated to raising money for research into treatments and hopefully a cure.
Along with family and friends, they hosted multiple fundraising events to support research for a cure and raise awareness of FOP. However, they encountered many barriers to accessing further help and funding from companies and organisations. They took the brave decision to become a fully registered charity, and happily received full charitable status in 2012, starting off as Friends of Oliver.
Since then they have continued to grow support both locally, nationally and internationally. In 2014 Friends of Oliver became FOP Friends to reflect the growing number of UK families who lend their time and talents to supporting our cause. Now entering it's sixth year, the charity has had success in grant and trust fundraising as well as increased fundraising from new FOP families, friends and the public.
It has taken hard work and time to get this far and it will take even more to make our vision a reality. With all your continued support, we will get there, and we will change the lives for not only Oliver but also the many other FOP families present and future.
Why Skillsarena are keen to support the charity and Fun Feet for FOP
We hope others will be able to join us to raise awareness and money to help the charity support the quest to find a treatment and a cure for FOP. We’d love to see you in your flip-flops on the day. Share your pictures with us on Twitter (@Skillsarena) or Linked in. Remember to use the #FunFeet4FOP