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FOP Friends Blog

#FunFeet4FOP is just over a month away and we’re so excited to announce that Skillsarena, the Chelmsford-based online talent management solutions provider, will be supporting us this year! On 23rd April, the whole team will be wearing flip-flops to the office to raise awareness of FOP.

About Skillsarena: 

Skillsarena's employment testshelp you recruit with confidence. Skillsarena create and develop highly configurable online tests and training modules designed to measure and provide evidence of candidate and staff workplace skills. Verify candidate skills through hundreds of online assessments with their Skills Testing; Personality Profiling test that delivers powerful and detailed insight and 360 Degree Feedback tool that reviews individuals from multiple perspectives. 

They also offer Skills Testing specific for certain industries. A variety of Retail specific tests to assess a candidate’s ability to handle real life retail scenarios; online recruitment assessments designed for the Housing industry; pre-built Finance assessments enable you to identify candidate knowledge related to financial responsibilities; as well as Logistics skills testing which assess basic “day to day” driver knowledge required by law.

https://skillsarena.com/dig-out-your-flip-flops-for-fop/


 What is FOP?

FOP (Fibrodysplasia Ossificans Progressiva) is one of the rarest, most debilitating conditions known to medicine.  Muscles, tendons & ligaments turn to bone imprisoning the body in a second skeleton. There’s currently no effective treatment, or a cure, and the average life expectancy is only 40-years-old.

What is #FunFeet4FOP?

#FunFeet4FOP is a social media campaign that takes place every year on 23rd April, coinciding with International FOP Awareness Day, and the discovery date of the gene responsible for FOP, ACVR1. People wear wacky shoes, snazzy socks, paint their feet crazy colours etc., then post photos of their fun feet online to raise awareness of FOP.

Why 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. Misdiagnosis is common, 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.


How your company can help:

Step 1

Make a blog post for us and share on your social media platforms

Step 2

Raise awareness – wear fun feet to work on the 23rd April

Step 3

Do more.  Help us fundraise.

Wear fun feet to work for a small donation; Hold a #FunFeet4FOP Event;  Bake a cake…

Hannah Dempsey
Thursday, 21 March, 2019 - 15:48

 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
Monday, 4 March, 2019 - 15:17

FOP Friends, the only UK charity that aims to raise awareness and funds for Fibrodysplasia Ossificans Progressiva (FOP), is delighted to announce that we have successfully secured a grant from Genetic Disorders UK to part-fund our 2019 Respite Family Weekend Break. We are one of 25 charities who were lucky to receive this generous donation. 

This funding, along with other grants from The Percy Hedley Foundation, The Bruce Wake Charitable Trust and The Adamson Trust, means that we have organised an outdoor activity weekend especially designed for FOP children, to encourage them to take part in activities they may never have had the opportunity to try before. 

The weekend will take place on the 15th - 17th March and we will be staying at Center Parcs, Sherwood Forest, Nottinghamshire; a prime location for travel across a wide geographic area. Center Parcs boasts a variety of activities to suit children of all ages including the subtropical swimming paradise, soft play areas, craft activities and treasure trails. 

This fun-filled weekend will give our children the opportunity to come together and try exciting new activities in a relaxed and safe setting, and should build their self-esteem and confidence. The Activity Weekend Break also offers a welcome opportunity for parents and family members to meet, share experiences and spend quality time together in an enjoyable environment. 


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. 

About Genetic Disorders UK

Genetic Disorders UK is a registered charity with a vision to improve the lives of individuals and families affected by genetic disorders. While individual genetic disorders are rare, it is thought that there are currently more than 6,000 diagnosed disorders and new disorders are being identified every day. It is estimated that 1 in 25 children is affected by a genetic disorder. This means that in the UK, 30,000 babies and children are newly diagnosed each year, and more than half a million children and adults are living with a genetic disorder. Every year, they host Jeans for Genes Day, which encourages people to attend their workplace/school in jeans and donate towards GDUK. Funds raised on Jeans for Genes Day provide grants for projects and services that benefit children affected by a genetic disorder. https://www.geneticdisordersuk.org/

About The Percy Hedley Foundation

The Percy Hedley Foundation provide a wide range of high quality, specialist and personalised care and education support to disabled people and their families. https://www.percyhedley.org.uk/ 

About The Adamson Trust

The Adamson Trust is a long established charity based in Perthshire, Scotland. 

They are able to help with the cost of holidays or respite breaks for disabled children from throughout the United Kingdom who are aged between 3 and 17 and have physical, mental or emotional impairments. They can only give help for this purpose. http://www.theadamsontrust.co.uk


About The Bruce Wake Charitable Trust 

The Bruce Wake Charitable Trust was established to encourage and assist the provision of leisure activities for the disabled. 




Hannah Dempsey
Tuesday, 5 March, 2019 - 16:10

Last year, Luchie talked with us about her excitement at starting an internship with a recruitment company. Just eighteen months later, and she has some more good news to share...

Hi All, I’m Luciana Wulkan aged 20 and am a sufferer of FOP. I was diagnosed at 2 and a half, but not a day goes by where I let my condition stop me leading a normal life... I’ve gone through school, completed GCSE’s and A-Level’s and did go to MMU (Manchester Metropolitan University) studying business and marketing for around 4 months, until I realised the university life wasn’t for me, not because of my condition but just the study side of things. I was ready to get stuck into work so that’s when I decided to do an apprenticeship. Which has been the best decision I made! 

I started a Business Administration NVQ Level 3 diploma at Workforce People Solutions Ltd in March 2017, whereby my role was a Business Development Intern. From the very first day I stepped in Workforce for my interview, straight away I felt a warm and friendly environment from everyone. Simon (CEO) and Rebecca (Director) ensured that I felt comfortable and that any adjustments were made prior to me starting, this included an adapted working week I.e starting 1 hour later and having a Wednesday off to ensure that I wasn’t over-exerting myself. I have never let my condition stop me from being able to work and it just goes to show that ‘anything is possible!’ Since completing my apprenticeship in August this year, I was promoted to a Business Development Executive, I was over the moon with the progress that I made with a huge thankyou to such supportive colleagues, senior management and my line manager Phil.

During the past 18 months at Workforce, I have experienced a flare-up which the cause was unknown, as we all know how unpredictable it can be...however, despite being in pain I still wanted to go to work and carry on as nothing stops me! Workforce have been amazing in understanding my struggles, and it was agreed for me to go on reduced hours for a couple of months whilst experiencing the flare up to ensure I wasn’t over working my body.

I just would like to say a HUGE thankyou to all the support I have had from everyone at Workforce, and as Simon said upon my promotion “It’s really inspiring to see that if you want to achieve something, nothing holds you back!”

Simon Hayton, CEO Workforce People Solutions Limited, had some great words to say about Luciana...

“Early in 2017, we decided that it was important for Workforce to support the next generation of young professionals who wanted to start their career in the recruitment industry. We created three intern roles in different areas of our organisation, and in the process of interviewing for these roles, we met Luciana.

What struck me from the very beginning was that Luciana was not going to allow her condition to hold her back – it was very clear that she was incredibly determined and focused on starting a career where she could build her own independence and make a difference.From the moment she arrived at Workforce, I saw how quickly our people warmed to her and how obvious it was to anyone who worked with her that she was not going to let her condition define her. 

She has worked really hard over the past 18 months to learn new skills, taking on some very demanding challenges along the way, which culminated this summer in her earning a promotion to Business Development Executive. 

 I know that our Business Development Manager, Phillip Ryan, sees her as an integral part of his team and someone who he can always rely on to ‘get the job done’.

Aside from her core job role, Luciana is also one of the first to suggest new ideas that can take Workforce forward, having won awards this year for her ideas, which we hope one day could change the way we all work.

Lastly, I have to mention her passion for baking!  We hold regular “Workforce Bake Off” events, which are always very competitive, with colleagues looking to deliver the perfect entry.  Luciana has now beaten the competition that many times that she has had to semi retire and become a judge, so the rest of the bakers can have a chance of winning!!  Her chocolate orange creations, whilst tasting sublime, are definitely not doing my waistline any favours!!  

I am so happy we got the chance to meet, interview and hire Luciana all those months ago – she is a credit to herself and I am very proud to have her as part of the Workforce team.”

Hannah Dempsey
Friday, 30 November, 2018 - 15:55

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

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