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Rachel and Helen attend the launch of the Adult Rare Bone Disease Network

27th November 2023

FOP Friends joined in at an event to celebrate the launch for the NHS Adult Rare Bone Network, a new Rare Disease Collaborative Network (RDCN)! The event we attended was hosted by Brittle Bone Society (BBS) Charity and Involved delegates from XLH UK, Fibrous Dysplasia Support UK and Metabolic Support UK. We also met with and listened to NHS healthcare professionals. The Adult Rare Bone Network is another step in innovating care for those with rare bone diseases. We heard from a range of speakers discussing a variety of elements regarding the Rare Disease Collaborative Network, including the Lord Kevin Shinkwin, a leading advocate in the disability sector, and Professor Kassim Javaid.

Helen awarded a British Empire Medal in the Queen’s Jubilee Honours List 2022

13th November 2023

In June, 2022, Helen was honoured to be awarded a British Empire Medal in recognition of her services to charity and the FOP community.  This was part of the Queen’s Jubilee Honours List.


Conference 2020 cancelled

8th January 2021

Due to the Covid-19 pandemic, we were left with no choice but to reluctantly cancel our Conference and Family Gathering 2020.  As we were unsure of when national and international travel would be safe once again, we had to cancel and keep our fingers crossed for holding the event in 2022, when we would also celebrate our 10th birthday as a charity.

Award for FOP Friends

1st July 2019

Chris and Helen are awarded the Jeannie Peeper Outstanding International Leadership Award.

Guidebook Published

1st May 2019

‘Supporting a Child with FOP: a practical guide to their learning journey’ is published, solely written by Trustee Helen.

Second Family Weekend Break Away

1st March 2019

The second FOP Friends Family Weekend Break Away takes place, funded by GDUK and three other trusts.

Our Third ‘Conference and Family Gathering’ Takes Place

1st May 2018

FOP Friends third Conference and Family Gathering took place. With talks from the world leading FOP experts, workshops and clinical consultations – everyone in attendance had a wonderful time connecting with one another.

Points of Light

1st January 2018

Chris and Helen are named the UK’s 883rd and 884th Points of Light. The Points of Light programme recognises outstanding volunteers who are making a real difference in their communities.

Charity of the Year Awards

1st October 2017

FOP Friends is ‘Runner Up’ as Charity of the Year at the Sale and Altrincham Chamber of Commerce Awards

FOP Friends Golf Tournament

3rd June 2017

Savills organise a charity golf tournament in aid of FOP Friends.

Genetic Disorders UK Partnership

2nd June 2017

FOP Friends partner with Genetic Disorders UK.

Vice Chancellor’s Circle Recognition

1st 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.

First Family Weekend Break

1st March 2017

The first FOP Family Weekend Break is held at Centre Parcs, thanks to a grant from BBC Children in Need.

FOP Features in Novel

1st 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.

‘Together’ Newsletter Launched

1st June 2016

We launched our ‘Together’ quarterly newsletter.

Our Second ‘Conference and Family Gathering’ Takes Place

2nd May 2016

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!

100K Bike Ride

1st May 2016

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


1st April 2016

In celebration of FOP Awareness Day, we launch our #FunFeet4FOP campaign.


2nd February 2016

FOP Friends approved for full membership of EURORDIS.

Adobe’s Charity of the Year

1st February 2016

Adobe chooses FOP Friends as their Charity of the Year.

Journal of Bone and Mineral Research

1st 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.

Avaya’s Charity of the Year

1st October 2015

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

PushOn’s Charity of the Year

1st June 2015

PushOn adopt FOP Friends as their Charity of the Year.

Celebrity Mastermind

1st December 2014

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

PwC Manchester and Avaya’s Charity of the Year

1st August 2014

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

FOP Friends is Founded

1st 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.

Our First ‘Conference and Family Gathering’ Takes Place

1st May 2014

FOP Friends organises their first Conference and 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.

University of Oxford Research

1st 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.

Senior Drug Developer Grant

1st December 2013

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

Charity Administrative Assistant

1st March 2013

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

Registered Charity

1st June 2012

FOP Friends of Oliver becomes a registered charity # 1147704.

University of Oxford Donation

2nd January 2012

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

Website Launched

1st January 2012

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


1st January 2011

Chris elected onto the Board of the IFOPA.

Friends of Oliver

1st January 2010

Family and friends begin fundraising to support the research team at Oxford, under the name Friends of Oliver.

FOP Diagnosis

1st April 2009

Bedford-Gay family receive devastating diagnosis of FOP.

Oliver is Born

1st March 2008

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