#FunFeet4FOP 2019 - International FOP Awareness Day, 23rd April

#FunFeet4FOP 2019 - International FOP Awareness Day, 23rd April

It's back! Now in its fourth year, #FunFeet4FOP is set to be bigger and better than ever. 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 feet? 

An important early indication of FOP is malformed big toes at birth. Individuals with FOP normally have 'Turned in Toes'. This classic sign is often not recognised, due to the rarity of FOP and the lack of awareness of the common physical FOP symptoms. Misdiagnosis of FOP is common (53% of cases), which in turn can result in traumatic, unnecessary treatment, such as biopsies, surgery, and chemotherapy. These treatments aggravate FOP symptoms and cause the progression to accelerate. It's vital we raise awareness to prevent future diagnoses suffering. 

Get involved:

  1. Find your style and take a photo 
  2. Upload it to all your social media pages from April 1st with the hashtags: #FunFeet4FOP #CureFOP
  3. Tag three friends to take up the challenge 
  4. Tag FOP Friends and add the link to this webpage. Spread the word and raise awareness!

Go the extra mile and complete a #FunFeetFeat:  

  • Have a 'Guess Whose Feet?' Competition 
  • Do a Wacky Shoe Race
  • Go to Work/School in Flip Flops/Crazy Socks/Crazy Shoes
  • Host a Fun Feet Dance - put on your best dancing shoes
  • Get a Foot Massage 
  • Have a 'Fill the Boot With Money' Competition 
  • Complete a Firewalk 
  • •Bake and sell biscuits shaped like feet 
  • Hold a shoe/sock fashion shoe
  • Decorate your footwear - either real version or picture template
  • Sponsored sport in wacky footwear e.g., walk/run/football tournament 


What will YOUR feet wear? 



What is FOP?

FOP, Fibrodysplasia Ossificans Progressiva, is one of the rarest, most debilitating conditions known to medicine, where muscles, tendons and ligaments turn to bone eventually imprisoning the body in a second skeleton. There is currently no approved treatment or cure, and the average life expectancy is only 40-years-old.

Watch our video narrated by Stephen Fry 

About FOP Friends

FOP Friends, originally Friends of Oliver, was founded by Chris Bedford-Gay in 2009 after receiving the devastating news that his son, Oliver, had FOP. With FOP being so rare (only 55 known cases in the UK), at the time of Oliver’s diagnosis there was no UK charity dedicated to raising funds for research into effective treatments and a cure. Friends of Oliver was originally set up with the goal to fundraise amongst the Bedford-Gay's family and friends, and raise the £120,000 per annum that is needed to sustain the FOP research team at Oxford University. As these fundraising and awareness efforts began to build momentum, more families living with FOP began getting in touch and the charity grew. Due to the increasing demand to maintain the Oxford research team, and the realization of the need for vital support for UK FOP families, charitable status was pursued in order to apply for grants and boost donations. Despite the amount of paperwork required, this was selflessly completed, with Friends of Oliver evolving into FOP Friends, and becoming an official registered charity on 15th June 2012. 

International FOP Awareness Day

International FOP Awareness Day takes place every year on the 23rd April. This date marks the anniversary of the discovery of the FOP gene ACVR1. This research breakthrough was pivotal in improving diagnosis for FOP patients and progressing the search for a cure. Since the discovery in 2006, genetic testing has been made available to improve patient diagnosis, the amount of interest from researchers worldwide has increased, and more recently we’ve even seen the launch of the first-ever clinical trials for FOP, from international pharmaceutical companies, Clementia and Regeneron. 


 

Hannah Dempsey

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