FOP Friends

FOP Friends’ aim is to further research into Fibrodysplasia Ossificans Progressiva (FOP) and related conditions by supporting current and future research projects.

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.


Our history (to 1st March 2017)

March 2008

Oliver Peter Bedford-Gay born, all the medical professionals just think he has ‘funny toes’.

November 2008

Oliver has mysterious lump removed from the back of his head.

April 2009

Bedford-Gay family receive devastating diagnosis of FOP.

2010

Family and friends begin fundraising to support the research team at Oxford.

2011

Friends of Oliver website created to celebrate and thank those who are supporting Oliver and the research team at Oxford.


 

Chris elected onto the Board of the IFOPA.

April 2011

First of many line dancing evenings held, which have been one of our biggest fundraisers, raising £16,000 to date.

2012

FOP Friends of Oliver website goes ‘live’ together with “What is FOP?” animated video, narrated by Stephen Fry.

June 2012

FOP Friends of Oliver becomes a registered charity # 1147704.

December 2012

Chris becomes an ‘informal’ member of University of Pennsylvania FOP research team to collaborate in development of the International FOP Flare-up survey.


 

First donation to the University of Oxford to support its research team: £10,000.

March 2013

First newsletter is published to celebrate the many different fundraising events being held across the country.

 

FOP Friends is awarded a grant for £16,000 from GDUK to fund a Charity Administrative Assistant.


December 2013

FOP Friends is awarded a grant to employ a Senior Drug Developer at the University of Oxford.

 

Annual donation to the University of Oxford’s research team, this time £20,000.

March 2014

£65,000 in funding is provided by FOP Friends to employ a full-time medicinal chemist within the University of Oxford’s FOP Research team.

May 2014

FOP Friends organizes a family gathering in Manchester, uniting UK FOP families for the first time in 12 years.  The world’s experts in FOP are also in attendance, including Prof. Kaplan.

June 2014

Friends of Oliver proudly becomes FOP Friends® to reflect the growing number of UK families now raising money together to support FOP research.

August 2014

FOP Friends’ Drug Developer begins work at the University of Oxford, alongside the excellent existing team.

 

FOP Friends is adopted by companies PwC Manchester and Avaya as their “Charity of the Year”.

September 2014

Two teams of FOP Friends’ runners take part in the Great North Run and the Windsor Half Marathon, raising £21,000 in total.

October 2014

FOP Friends makes an incredible donation of £70,000 to help maintain the research team at the University of Oxford for another year.

November 2014

The website is updated with personalised “Friends” pages to recognise and celebrate the amazing people who make up FOP Friends.



 

FOP Friends Founder and chairman Chris attends the IFOPA Drug Development Forum in Boston, with over 100 researchers and interested pharmaceutical companies in attendance.  A milestone in the search for a treatment and cure for FOP.

December 2014

FOP Friends decorate their annual Christmas Tree at St. Alban’s Church, Cheshire, with photos of FOPers from around the country.

 

CBBC’s Katie Thistleton appears on Celebrity Mastermind and her chosen charity is…FOP Friends!


January 2015

Clementia open first European trial site in Paris, which some of our UK FOPers then took the opportunity to take part in. Everyone in the FOP community thank you for furthering the research.


 

The Scotts and the Bedford-Gays are delighted to attend Richard Simcox’s Burns Night Gala in aid of FOP in Aberdeen. A superb evening, hosted by one of FOP’s greatest and longest supporters.

February 2015

Chris visits a very cold Philadelphia for his in-person IFOPA board meeting.  He visits the Mutter museum to see the world-famous skeleton of Harry Eastlack.


 

Rachel Winnard and her family travel to Australia to visit their new little FOP buddy Jarvis, a friendship they formed at the Gathering.

March 2015

Chris is honored to be invited to, and attend, the 1st UK Genetic Disorders Leadership

Symposium in London.

 

An update meeting at Oxford with the excellent FOP research team. Chris, Rachel, Nicky, George and Marian all attend.


 

Chris visits Rome for the FOP Italia conference: twelve countries coming together to find a cure for FOP.

June 2015

Chris flies to Boston for the first IFOPA Strategic Planning meeting. He visits the FOP research team and laboratory at Harvard University, who are collaborating with the team at Oxford to find a treatment. Next, he visits Blueprint Pharmaceuticals to learn of their progress and then goes on to Regeneron Pharmaceuticals in Tarrytown, New York. Chris finishes his whistle-stop tour with a quick visit to the FOP lab at the University of Pennsylvania.

 

PushOn adopt FOP Friends as their Charity of the Year.


 

Jake (7) and Amy (4) have the idea to sell some of their unwanted toys and raise £75 for FOP Friends.

August 2015

FOP Friends are delighted to announce our first FOP Friends employees, David Pilkington and Mari Jones, funded thanks to GDUK and other minor grants: a milestone in the charity’s history


September 2015

The amazing Great North Run Team 2015 raise £14,000.


October 2015

BBC’s Casualty run a story about a character with FOP. Whilst FOP was only touched upon briefly, it did put FOP ‘out there’ once more, hopefully raising further awareness.

 

FOP Friends is selected as Avaya’s Charity of the Year, and many exciting fundraising activities are planned.

November 2015

The Natural History of Flare-Ups in FOP is published in the Journal of Bone and Mineral Research. Chris is credited as one of the contributors.

 

 

PwC Manchester present us with the cheque from their Charity of the Year activities, they raise over £30,000. It is their most successful fundraising year to date.

 

Clementia open their Clinical Trial Site in London, UK, under the supervision of Dr Richard Keen.


 

Chris flies out to Amsterdam for the Dutch FOP Symposium.

 

Amy Whyte organises a ‘Channel Swim’ at the local swimming baths which is attended by CBBC’s Katie Thistleton.


December 2015

We are thrilled to be selected as part of BG Group’s share dealership programme.

January 2016

FOP Friends’ oldest supporter Mrs. Laura Gregory celebrates her 102nd birthday and donates her gift money to find a treatment for her great-grandson Oliver.

 

FOP Friends is excited to announce the award of a grant from The Big Lottery Fund to help fund the UK FOP Conference and Family Gathering 2016.


February 2016

FOP Friends approved for full membership of EURORDIS on 8th February.


 

Chris heads off to Florida for a few days in the sun his annual in-person board meeting for the IFOPA.


 

Luciana tells her story to a national newspaper to raise awareness of FOP.

 

Adobe chooses FOP Friends as beneficiary of their Charity of the Year.


 

FOP Friends is honoured to be invited to the prestigious Eurordis Awards and Black Pearl Evening in Brussels, along with many FOP leaders from around the world.


 

We celebrate Rare Disease Day by announcing that we, along with FOP France, Swiss FOP and other donors, have funded the excellent research team at Oxford for yet another year.

March 2016

Rachel Winnard appears on ITV’s ‘Emergency Room with Jeremy Kyle’ to raise awareness.

 

Trustee Rachel Almeida is proud to attend at the Genetic Disorders UK Conference, London, on behalf of FOP Friends.

 

The Hospital Saturday Fund awards FOP Friends a grant that will fund a new microscope for the FOP research team at Oxford.

 

Chris attends his second FOP Italia meeting in Livorno.  A very positive conference with lots of exciting developments in the field of research, from all around the world.

April 2016

In celebration of FOP Awareness Day, we launch our first national social media campaign, encouraging all our supporters to wear #FunFeet4FOP.  The weekend is an incredible success with many people posting photos of their weird and wonderful footwear.  Oliver and Annelese’s schools both join in to raise money as well as awareness.

May 2016

Savills take part in a 100k bike ride to raise funds and awareness for FOP Friends and the charity Dreams Come True.

 

The second ‘FOP Friends Family Gathering’ is a great success; Dr Keen sees patients in the morning before going to run the Manchester 10k to support FOP Friends, then is back to see more patients after!

June 2016

The NERDOC guys ride an amazing 270-mile round trip from one UK coast to another for the second time.

 

Dr Keen presents on the International FOP Association (IFOPA) FOP Connection Registry at Bone Research Society meeting.

 

FOP Australia holds an official launch, marking one year since the organization was established by Lara Boniface, mum of FOPer Jarvis.

July 2016

Kevin Gordon completes a sponsored cycle from Lands’ End to John O'Groats in 15 days, helping to raise awareness of FOP.

August 2016

The eBay Charity UK sale for FOP Friends proves a great success.

September 2016

Several FOP Friends champions take part in the Great North Run and London to Brighton cycle.

October 2016

Organized by Margot Charlton for the third year in a row, the charitygig for Isla is held on the Isle of Wight. The L&M Band play 60’s tunes to dance the night away with attitude.

 

Chris attends the IFOPA Drug Development Forum in Boston.

 

Helen and the boys visit Centre Parcs to check out the facilities for the FOP Family Weekend.

December 2016

FOP Friends decorates a Christmas tree at the annual event at St. Albans, with decorations made by the FOP families at the Family Gathering in May.

 

The “Don’t send me a card” appeal proves an effective way of saving the trees and raising some £s for FOP Friends.

January 2017

Chris, Oliver, and FOP Friends received an exciting acknowledgement in Fiona Cummins' debut novel 'Rattle'. Chris consulted on the book as one of the main characters suffers from FOP. One to look out for in the cinemas soon!

February 2017

Anoushka, 16, from Azerbaijan, arranges for five groups of swimmers from the Baku sharks to swim the equivalent of the English Channel over two weeks. Each group swam 32km, and together they raised £360 for FOP friends.

 

Chris attends the Eurordis Black Pearl Rare Disease Gala in Brussels.

March 2017

Isla and Maddie organise a cupcake stand at their school quiz night to raise money for FOP.

 

At the annual UKGD conference, Paralympic athlete Libby Clegg speaks about her experience on becoming a champion.

 

The FOP family weekend is held at Centre Parcs, thanks to a grant from BBC Children in Need.

April 2017

The Stockport Taekwondo group hold a charity fundraiser in connection with the #funfeet4FOP campaign.

 

Nicky Williams hosts a #Swap4FOP raising £100 for FOP Friends

 

Sheryl, Cate and Howard run the Hackney Half Marathon, while Jo completes the London Marathon, all in aid of FOP Friends. Nick Coogan also runs the London Marathon, bringing in £1,450.

May 2017

FOP Friends is thrilled to receive an invitation to join the Vice Chancellor’s Circle in recognition of the generous support of the research into FOP at Oxford University. Chris and Helen get glammed up and attend the annual meeting.

 

James gets down and dirty with the Tough Mudder challenge in support of FOP Friends.

 

William Jones, aged 9, continues his fantastic fundraising efforts with a sweet stall at the Ramsbottom farmers market.

 

An FOP Friends contingent swoop through the Superhero Run in London.

 

James & Nathan from Record Currency Management carry out a 24-hour pool tournament as an innovative FOP Friends fundraiser.

June 2017

Lucia, aged 7, takes part in the London Colour Run as part of Team Isla.

 

Savills organise a charity golf tournament in aid of FOP Friends

                     

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FOP Friends is a Registered Charity in England and Wales #1147704

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