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FOP Friends Blog

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.

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.

About The Adamson Trust

The Adamson Trust provides financial help with the cost of holidays or respite breaks for disabled children aged between 3 and 17 with physical, mental or emotional impairments.

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
Wednesday, 20 February, 2019 - 14:35

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

FOP Friends would like to invite you to the third UK Conference and Family Gathering 2018.  This will be held again at the Radisson Blu Airport Hotel, Manchester. Booking closes soon. 

We are delighted to announce that Professor Fred Kaplan, Professor Robert Pignolo, along with Dr Richard Keen from RNOH will be attending, along with other internationally respected FOP experts.

This year’s main theme will be living with FOP, with a clear focus on patients and families.

There will be presentations from our world-renowned FOP experts along with representatives from the pharmaceutical companies who are at the forefront of FOP research.  Complications FOPers face with regard to their dental health will also be addressed by Dr Gehan Abou-Ameira from GOSH.  Attendees will also be able to ask questions during a Q&A panel session.

In the afternoon, there will be workshop sessions to provide an opportunity for families and FOPers to break off into groups and discuss topics of relevance to them.  The workshops will be guided by facilitators to enable attendees to get the most out of the sessions.

Clinical appointments will be available for FOPers, and led by Professor Kaplan, Professor Pignolo and Dr Keen.  Taking place over three days, appointments will give patients the opportunity to consult with the physicians privately. 

Childcare, and a quiet space for young adults, is provided to enable parents to participate fully in the day. 

There will be a family dinner in the evening with light entertainment provided.  This is an informal and fun affair where parents can relax together and simply enjoy each other’s company. 

We have been lucky enough to secure a grant from the Big Lottery Fund (National Lottery).  This means that patients, their main carer, parents and siblings can benefit from a generous discount of 50%, freezing the cost to 2016 prices. For more information, click here 

Book online now: CLICK HERE

Hannah Dempsey
Wednesday, 25 April, 2018 - 11:17

International FOP Awareness Day 2018 takes place on April 23rd and we want as many people as possible to get involved with our #FunFeet4FOP campaign to raise lots of awareness for FOP. 

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 Fun 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 of FOP. This may lead to misdiagnosis (often of cancer), which in turn can result in traumatic, unnecessary treatment that aggravate the symptoms.

Here are 4 simple steps to get involved:  

Step 1  

Tell your friends, family, colleagues...everyone and share the link to this webpage.

Step 2

Find your style and take a photo! Ideas include: Wearing snazzy socks, wacky wellies, bizarre boots. Get creative with an eye-catching pedicure, or take a snap of your pet in slippers! You could even hold a Fun Feet Day at the office, or a Flip Flop Day, asking participants to donate, with proceeds going to FOP Friends.

Step 3

Upload your photos on social media along with the hashtag #FunFeet4FOP. Be sure to tag FOP Friends on Facebook and Twitter and add the link to this website page. 

Step 4

We'll be posting a variety of #FunFeet4FOP photos on our Twitter and Facebook pages. Check them out, give us a like, and share some of the ones you find the funniest! 

Share your own posts with friends and followers - tag five friends (one for each toe!) and get them to join in with the campaign - and include details about how to donate to FOP Friends:

Text CFOP00 £20 (or any other amount) to 70070 oDonate Online via Virgin Money Giving here. You could even set up your own fundraising page on Virgin Money Giving. 

If you have any questions or would like some more ideas, please contact us. We will be running a competition for the best post - so be creative! 

Hannah Dempsey
Tuesday, 10 April, 2018 - 10:59


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