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2024-03-01-accounts

ANNUAL REPORT

& FINANCIAL STATEMENTS YEAR ENDING 1[ST] MARCH 2024

Charity Commission for England & Wales #114770

Office of the Scottish Charity Regulator #SCO46950

Our Vision

Our Mission

One day, no one will suffer the full effects of Fibrodysplasia Ossificans Progressiva (FOP) and related conditions.

Promote programmes of research, advocacy, education, support, and awareness to discover treatments and a cure for Fibrodysplasia Ossificans Progressiva (FOP) and improve the lives of all it affects.

Our Values

Charity name

Founding Trustees

FOP Friends

Alison Acosta Bedford

(founding trustee)

Working Names

Christopher Bedford-Gay

(founding trustee)

FOP Friends of Oliver, FOP Action

Rachel Almeida

Registered address

The Cabin, 1 Cumberland Road, Sale, Cheshire, M33 3FR, United Kingdom

(founding trustee)

Trustees

Fiona White

Registered

March 2012

John Lever

Helen Bedford-Gay Nicky Williams

Charity number

Independent auditor

1147704

P.S. Hutchinson BSc FCA, 246 Park View, Whitley Bay, Tyne, and Wear, NE26 3QX

Governed by

Trust Deed

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Contents

Our Vision .......................................................................................................................................................... 2 Our Mission ....................................................................................................................................................... 2 Our Values ......................................................................................................................................................... 2 Charity name ..................................................................................................................................................... 2 Working Names ................................................................................................................................................. 2 Registered address ............................................................................................................................................ 2 Registered .......................................................................................................................................................... 2 Charity number .................................................................................................................................................. 2 Governed by ...................................................................................................................................................... 2 Founding Trustees ............................................................................................................................................. 2 Trustees ............................................................................................................................................................. 2 Independent auditor ......................................................................................................................................... 2 Contents ............................................................................................................................................................ 3 What is Fibrodysplasia Ossificans Progressiva (FOP)? ....................................................................................... 7 Introduction and Chair’s Statement .................................................................................................................. 8 About us / Who we are ..................................................................................................................................... 9 Trustees ........................................................................................................................................................... 10 Christopher Bedford-Gay - Founding Trustee and Chairman ...................................................................... 10 Alison Acosta Bedford - Founding Trustee .................................................................................................. 11 Rachel Almeida – Founding Trustee ............................................................................................................ 11 Fiona White - Trustee .................................................................................................................................. 12 John Lever - Trustee .................................................................................................................................... 13 Helen Bedford- Gay – Trustee ..................................................................................................................... 13 Nicky Muller – Trustee ................................................................................................................................. 14 Meeting Charity Commission guidelines ......................................................................................................... 15 Our principal objects ................................................................................................................................... 15 Research Highlights ......................................................................................................................................... 16 University of Oxford .................................................................................................................................... 16

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How we raised our money .............................................................................................................................. 17 How we spent money raised ........................................................................................................................... 17 Achievements .................................................................................................................................................. 18 Regeneron Presentation .............................................................................................................................. 19 IFOPA Board Meeting in Boston, Massachusetts, USA ............................................................................... 19 The Alma Triffitt Book Award ...................................................................................................................... 19 Helen and Chris attend The Royal Garden Party at Buckingham Palace. .................................................... 19 The University of Salford Project continues. ............................................................................................... 20 FOP Friends Visits Number 10 Downing Street ........................................................................................... 20 Launch of the Adult Rare Bone Network ..................................................................................................... 20 First, do no harm: Expert reflections on a rare bone disease ..................................................................... 20 Funding FOP Research ................................................................................................................................. 21 Collaboration with Medics for Rare Diseases and the Student Voice Prize ................................................ 21 International FOP involvement ................................................................................................................... 21 Fundraising Regulator .................................................................................................................................. 21 Rare Disease Awareness .............................................................................................................................. 21 # FunFeet4FOP and Global FOP Awareness ................................................................................................ 22 In the media ................................................................................................................................................. 22 Attendance at Conferences and meetings .................................................................................................. 22 Impact and value ............................................................................................................................................. 23 Fundraisers ...................................................................................................................................................... 24 Alanna’s Awareness Day .............................................................................................................................. 24 Our very own Superheroes .......................................................................................................................... 24 London Marathon for FOP Friends! ............................................................................................................. 24 Batchwood Golf Club Charity of the Year .................................................................................................... 25 Trek to Base Camp ....................................................................................................................................... 25 Chiltern 50 Ultra Challenge ......................................................................................................................... 25 Future plans ..................................................................................................................................................... 25 Ambition and long-term strategies ................................................................................................................. 26

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Charity objectives ........................................................................................................................................ 26 Preventing misdiagnosis .............................................................................................................................. 27 Fundraising .................................................................................................................................................. 27 Family support ............................................................................................................................................. 27 Medical support........................................................................................................................................... 27 Governance and Structure .............................................................................................................................. 27 Legal Status .................................................................................................................................................. 27 Organisational Structure ............................................................................................................................. 28 Trustee recruitment and training ................................................................................................................ 28 Employment ................................................................................................................................................ 28 Trustee recruitment and training ................................................................................................................ 28 Statement of responsibilities of the trustees .................................................................................................. 29 Financial review ............................................................................................................................................... 30 Summary ...................................................................................................................................................... 30 Income ......................................................................................................................................................... 30 Grants, trusts, and corporate sponsorship .................................................................................................. 30 Charitable expenditure ................................................................................................................................ 30 Gains and losses .......................................................................................................................................... 30 Policy on reserves ........................................................................................................................................ 31 Designated Funds ........................................................................................................................................ 31 Future commitments ................................................................................................................................... 31 Restricted Funds .......................................................................................................................................... 31 Investments ................................................................................................................................................. 31 Independent examiner’s report .................................................................................................................. 31 Our history (to 1[st] March 2024) ....................................................................................................................... 41 Thank you (March 2023 – February 2024) ...................................................................................................... 66 FOP National Organisations ......................................................................................................................... 66 Trusts / Grants ............................................................................................................................................. 66 Corporate Supporters .................................................................................................................................. 66

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Donors of time and resources ..................................................................................................................... 66 Community / Clubs and Associations .......................................................................................................... 66 Fundraisers .................................................................................................................................................. 66

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What is Fibrodysplasia Ossificans Progressiva (FOP)?

Fibrodysplasia Ossificans Progressiva (FOP) turns otherwise healthy people into human statues: a healthy mind locked inside a frozen body. FOP is one of the rarest and most disabling genetic conditions known to medicine, causing bone to form in muscles, tendons, ligaments, and other connective tissues.

Bridges of extra bone develop across the joints, progressively restricting movement, forming a second skeleton that imprisons the body in bone. There are no other known examples in medicine where one normal organ system turns into another.

Most cases of FOP are new, meaning no-one else in the family has FOP. This happens because unexpected changes (mutations) occur as the genes are passed along from each parent. Many of these changes, such as the mutation that leads to FOP, are accidents of nature that happen for no apparent reason.

Children with FOP appear normal at birth except for congenital malformation of the great toes. During the first or second decade of life, painful swellings that look like tumours develop over the neck, back and shoulders and mature into bone.

FOP progresses along the trunk and limbs of the body, replacing healthy muscles with bone. These bridges of bone significantly

restrict movement and attempts to remove them result in explosive new bone formation because trauma, like surgery, knocks and bumps, accelerates the FOP process. FOP is extremely variable and unpredictable. In some, progression is rapid, while in others it is gradual. Fibrodysplasia Ossificans Progressiva (FOP) causes progressive debilitation eventually leading to early death.

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Introduction and Chair’s Statement

As we close our 12[th] year as a fully registered charity and my 15[th] year as a parent of a child with an ultra-rare condition, I reflect upon how our lives were changed in 2009 when our then one-year-old son, Oliver, was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP).

At that time there was a patient support group, FOP Action, but no charity dedicated to FOP in the UK, there was however research taking place at the University of Oxford, which is where our journey began, fundraising to support the research team. However, not long after the decision to become a registered charity was made, and “FOP Friends” or rather “FOP Friends of Oliver” as it was, was born.

Starting with a desire to change the future for those with FOP, the charity quickly evolved beyond funding only research, to take on the challenge of finding a treatment, or even a cure for FOP, whilst supporting all the families affected by FOP in the UK. At this time, we became “FOP Friends” with FOP Action merging also.

Registered as a charity in in 2012 over the past 12 years, we've grown from a small grassroots effort into a nationally and internationally recognised organisation involved in everything from awareness raising to policy making and lots in between, but always with one goal, changing the lives of everyone living with FOP.

We have; funded research , investing in projects that are bringing us closer to a cure; supported families , providing resources, support, and assistance to families, helping them navigate the challenges of this rare condition; and raised awareness , through education and advocacy campaigns, increasing public awareness of FOP, leading to earlier diagnoses and improved care for patients.

We are forever grateful for the unwavering support of our community, donors, and volunteers whose invaluable contributions have made this all possible, and who have already made difference in the lives of our FOP community. Together, we will fight for a future where FOP becomes a mere inconvenience.

We hope more will join us in our mission with support, whether through donations, volunteering, or spreading awareness, to help us continue to bring hope to families affected by FOP and accelerate our progress towards treatment and ultimately a cure.

Chris Bedford-Gay, Founder and Chairman of FOP Friends.

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About us / Who we are

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

FOP research has far-reaching implications for those with FOP but also those with common bone disorders such as fractures, osteoporosis, osteoarthritis, and other forms of heterotopic ossification that occur through trauma such as military and sports injuries, paraplegia, and post-hip surgery complications. More recently, research has shown that a rare form of childhood brain cancer, DIPG, could benefit from FOP research and vice versa.

FOP Friends aims to raise public awareness of FOP by holding and promoting charitable events and encouraging the news media to report upon FOP and related conditions. This will serve to educate the public to the existence of FOP and of research projects that will benefit not only FOP sufferers but also those with disorders that are more common.

FOP Friends was founded following the diagnosis of Oliver Bedford-Gay (14) with FOP at the age of 1. The aim of the charity is to support the search for a cure while raising awareness and educating the public and medical world of the condition. FOP Friends supports existing patient organisations; existing research programmes such as at the University of Oxford; promotes FOP research worldwide; and helps other families impacted by FOP.

Each year the trustees vote on research or other projects to support with monies raised. To date, this has been targeted at maintaining (and growing) the University of Oxford’s FOP Research Team.

FOP Friends continues to support the search for a cure that will not only benefit those with FOP but many other related conditions.

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Trustees

There must be at least three trustees. Except for the founding trustees, trustees are appointed for a term of two years by a resolution of the trustees passed at a special meeting called under clause 15 of the Trust Deed. Selection of new trustees must have regard to the skills, knowledge and experience needed for the effective operation of the charity.

Christopher Bedford-Gay - Founding Trustee and Chairman

Chris has been involved with the FOP community since his son Oliver’s diagnosis in 2009. He was one of the founding trustees of FOP Friends, after learning that there was no UK charity to support families with FOP. Chris has served on the Board of the IFOPA for eleven years and is now stepping down. He will continue to be involved in the wider FOP community as he continues to serve as Chairman of the IFOPA International Presidents’ Council. The IPC brings together FOP organisations and leaders from across the world. Chris is a published author on several FOP papers and was instrumental to the success of the world-wide FOP Flare-up study.

He has been an active member of the Manchester Round Table for many years and helped them to raise thousands of pounds for local good causes. Now too senior for the Round Table, he has helped to set up a new 41 Club – for the ex-Tabler!

Chris is the Chief Technical Officer for his company Skillsarena, a UK-based technology company.

Chris is married to Helen, and they live with their three children Oliver, Leo, and Harry. In his spare time, Chris enjoys going to the gym, playing badminton, and swimming. He has most recently decided to follow in his younger sons’ hobby – lacrosse. Chris also enjoys his annual road-trips around America as it gives him chance to take some time out from the busyness of his life.

Education

Experience

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Alison Acosta Bedford - Founding Trustee

As a founding trustee, Alison has been an integral part of the FOP Friends journey since its inception. Leveraging her expertise as a Chartered Management Accountant, she manages the financial accounts of the charity and tackles diverse administrative tasks and actively contributes to fundraising initiatives. In her role as the chair of trustee meetings, Alison employs her professional skills to oversee the day-to-day staffing and operations of the charity.

Alison takes immense pride in the remarkable growth of FOP Friends and the biennial family symposiums held in May, showcasing the pivotal role the organisation now plays in the FOP community.

Education

Experience

Rachel Almeida – Founding Trustee

Rachel is Head of Events and Sponsorship for the Association of Colleges. With over 18 years of expertise in the world of events, she oversees educational conferences with a passion for making a positive impact. Rachel uses this

experience to help to coordinate the FOP Friends’ conferences and other events.

Her connection with FOP Friends resulted in Rachel embracing a new challenge –

her first-ever fun run. The Great North Run half marathon became a canvas for her determination, as she crossed the finish line in under 2 hours and 30 minutes, all in support of FOP Friends. But Rachel didn't stop there. Her marathon journey unfolded in her hometown of Manchester, with the cheers of her nephew Oliver echoing in the background.

In Rachel's world, events are not just gatherings; they are platforms for change. As she continues to lace up her running shoes and organise impactful conferences, Rachel embodies the spirit of using one's skills and passion to create a meaningful difference in the world.

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Education

Experience

Fiona White - Trustee

Fiona is a lead teacher, working in a primary school. She is a member of the senior leadership team, having gained the National Professional Qualification in Senior Leadership (NPQSL). As a close friend of the Bedford-Gay family for many years, Fiona was devastated to learn about their son Oliver’s condition. She has grown to understand just how important it is to raise awareness of FOP and ensure much

needed funds are raised in order continue the search for a cure. Over the years of support, Fiona has taken happiness from watching the children with FOP, grow into amazing young people.

Fiona is dedicated to using her professional skills to support FOP Friends’ vision. The growth of the charity and its ability to support the FOP community makes her more determined to be part of the progress towards finding a cure.

Education

Experience

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John Lever - Trustee

When John heard about Oliver and others with FOP, he wanted to do what he could to help. As a first step, he produced a video through his creative company, claritycomms.com, engaging Stephen Fry to provide the voice over and to subsequently

tweet to his millions of followers. John is now enjoying exploring some exciting innovative ideas to help FOP Friends raise awareness and funding. He feels it is a privilege to be part of such an inspiring team, on such an important mission.

Helen Bedford- Gay – Trustee

Helen is the Director of Operations, running the charity’s office on a day-to-day basis. She manages the fundraisers who hold events for FOP Friends, ensuring that people who support and donate to the charity know that their contributions are valued and making a difference. Helen develops and maintains the website, runs the social media accounts, writes the newsletters, and is responsible for all the

promotional materials for the charity.

Drawing from her background as an experienced teacher, Helen extends a compassionate hand to families in need. Acting as the first line of support, she offers a network of understanding friends and practical guidance for parents navigating the challenging road ahead.

Helen oversees any projects which need to be fulfilled as a result of successful grant applications and to deliver the missions of the charity. The well-received school guide, 'Supporting a child with FOP,' is a testament to her commitment to empowering parents and teachers alike. Collaborating on an international scale, she's working with FOP Brazil and Dr Patricia Delai to update and translate the guide for families in Brazil.

In 2022, Helen was elected to the Board of the IFOPA, a testament to her impact. Her pride in this work goes hand in hand with genuine care for the families she supports. Her efforts were not only recognised but celebrated, as she received a British Empire Medal in the Queen's Jubilee Honours list for services to charity and the FOP community in June 2022.

Education

Experience

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Helen is married to Chris, and they have three children, Oliver, Leo, and Harry.

Nicky Muller – Trustee

Nicky is passionate around raising awareness of FOP and raising funds to get the cure

that is in all our dreams. Nicky’s daughter Isla was one of the youngest children to be diagnosed with FOP. After coming to terms with the initial shock of diagnosis, Nicky began fundraising to support the search for treatments. Along with her network of friends and family, Nicky continues to organise a series of successful

events and sponsored sporting activities to raise funds in aid of FOP Friends. Nicky works part-time as a Marketing Campaigns Manager for Avaya, and she has used her business contacts to gain support for the charity from several large companies and organisations.

Education

Experience

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Meeting Charity Commission guidelines

In setting our objectives and planning our activities, the Trustees have considered the Charity Commission’s general guidance on public benefit.

Our principal objects

The relief of distress and sickness for those affected by Fibrodysplasia Ossificans Progressiva (FOP) a tragic, degenerative, and debilitating condition and to improve the lives of sufferers and their families.

Public Benefit: Removing FOP as a disabling health condition will greatly improve the lives of those with FOP and related conditions through prevention of a degenerative, life shortening disease. Related conditions, which will reap the rewards of FOP research, include fractures, osteoporosis, osteoarthritis, military and sports injuries, paraplegia, and post-hip surgery complications.

To raise public awareness and understanding of Fibrodysplasia Ossificans Progressiva (FOP) and to promote education and research into the study and cure of FOP and related conditions.

Public Benefit: Raising awareness will help to reduce misdiagnosis of the condition, which has been mistaken for cancer in the past (to the degree that some sufferers have undergone aggressive cancer treatments and harmful surgeries unnecessarily). It will also help to promote research into the condition, which will benefit FOP sufferers, but also other more common related conditions.

To support charities and organisations in the UK and abroad by undertaking charitable activities to fund research; and to provide help, support, care, and treatment for people affected by FOP and related conditions.

Public Benefit: Supporting other charities and organisations of this nature will benefit the public by providing care for those with FOP but also by furthering research that will lead to treatments and ultimately a cure for FOP, thus eliminating FOP as a health concern. FOP research projects will also benefit many people suffering with more common health conditions.

To support organisations researching treatments and a cure for FOP and related conditions.

Public Benefit: Research into a treatment, and eventually a cure, for FOP will benefit all existing suffers and all those in the future diagnosed with the condition. It will also benefit many more common related conditions, which affect a larger section of the public and the Armed Forces.

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Preventing Misdiagnosis.

Public Benefit: The rarity of FOP has resulted in many cases of misdiagnosis. This has led to FOP patients receiving wrong information and interventions, resulting in a more rapid progression of the condition and unnecessary surgery and treatments. As children will continue to be born with FOP, preventing misdiagnosis is one of FOP Friends’ key public benefits and achieved through our previously stated aims of awareness, education, and advocacy.

Research Highlights

University of Oxford

StopFOP

The FOP Research team continues to support work on the StopFOP trial, an academic clinical trial of a potential treatment for FOP, saracatinib. The potential treatment itself was discovered by the University of Oxford research team that is funded by FOP Friends.

Ipsen

Ipsen announced that the European Commission has determined not to grant marketing authorisation for palovarotene. Ipsen are continuing to seek regulatory approval in other countries and regions. This will come as a huge disappointment to many, including the UK, as currently there is no approved treatment for FOP.

One country that did approve palovarotene as the first treatment for FOP was the USA. Palovarotene, to be marketed under the name, Sohonos, will be available to patients living in America along with Canada and Australia.

University of Pennsylvania

A healthy young man, with classic FOP, had an extreme lack of FOP bone growth and nearly normal mobility. Thanks to his generosity and willingness to be studied the team identified a reduction in the level of an inflammatory protein MMP-9. FOP mouse models subsequently showed that MMP-9 inhibition prevented or dramatically decreased FOP bone growth and amazingly it helped damaged muscle tissue to regenerate. These results suggest that MMP-9 plays a key role in the development of FOP and that targeting this protein could be a potential treatment for the disease and future trials of MMP-9 inhibitors are planned.

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How we raised our money

Voluntary income accounts for most of the money raised within our charity’s financial year. Investment income increased in value as we took advantage of higher interest rates on longer term funds. Fundraising from dedicated events remained low.

This year there was large decrease of 66% in voluntary income to £73,724 overall with another notable drop in unrestricted funding, mostly from community fundraising efforts of 41% to a total of £42,249 from £71,804 the previous year. This is partly due to a nonconference year but also as we have focused on completing existing projects before seeking further funding for future work.

We saw a decrease in revenue generated from sales to £906 from £2,009 the previous year. A small value but notable decrease on the previous year.

From a total £83,617 incoming resources, £34,453 (41%) were restricted. The remaining £49,164 (59%) being unrestricted.

This charity year, the distribution of restricted and unrestricted is more closely balanced where in the past there was a large % attributed to restricted only. This is largely due to our focus on completing existing project before seeking funding for future projects. However, as noted above the amount of voluntary, unrestricted, income has dropped significantly, something many charities are facing as the cost-of-living increases ever upwards.

How we spent money raised

Since 2013, FOP Friends has operated with paid staff and volunteers. Staff and operational costs continue to be largely supported with restricted grants and donations in line with our charitable objects.

This means 89% of all fundraised money directly supports our charity objects of; family support; awareness; and funding research. This is a small % drop from previous year is largely due to an increase in fundraising costs and reduction in fundraising itself. [Note: Voluntary Donations VS Fundraising Costs]

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Uniquely, in this charity year FOP Friends donated £0 to FOP research. Although this would appear to be a dramatic event, this has simply occurred due to research funding requests being delayed to just after the end of this charity year, as such the research funding will therefore show in next year’s annual report.

We anticipate providing circa £100,000 in research funding to the University of Oxford, as the main beneficiary of FOP Friends, and one of a small number of teams in the world conduction research into FOP. We also anticipate supporting several other FOP research projects through the In Pursuit of a Cure work.

Fundraising costs of £5,276 is attributed to the provision of fundraising materials and merchandise to support various fundraising activities.

Resources expended on operation of the charity, which includes salaries, memberships and subscriptions, maintenance,

and general expenses, all continue to be funded through grants and corporate sponsorship leaving ‘fundraised’ money designated to the charity objects.

Governance costs of £554 is attributable to the continued operation of the charity. Governance includes accounting fees, insurance, professional memberships, and costs associated with training and supporting trustees and staff.

Achievements

Like many other charities, engaging fundraisers continues to be increasingly challenging, especially with a small community to draw from and the effects an ongoing cost-of-living crisis. However, we continue to push forward and motivate our supporters.

We recognise that successfully expanding FOP awareness and fundraising efforts beyond immediate circles is crucial for charity growth and sustainability, so we are using a range of strategies such as social media, media, and networking to engage a broader audience. Our progress owes much to the continued support of FOP families, united in our shared mission.

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Regeneron Presentation

As part of their commitment to raising awareness of rare conditions, pharmaceutical company Regeneron invited Oliver and Chris to their office in Uxbridge to give a presentation as part of their Rare Disease Awareness Day events (held in March rather than the official month of February). Oliver continues to grow in confidence when delivering

presentations and sharing his story and experience of living with FOP.

IFOPA Board Meeting in Boston, Massachusetts, USA

Helen attended her first in-person board meeting for the IFOPA. She flew to Boston, MA, where she met with many of the staff and board members for the first time. It was a weekend packed with meetings and presentations from both the staff as well as researchers from Boston who spoke about how the IFOPA’s support was helping to progress their work. There was also a visit to

Massachusetts General Hospital, where Professor Paul Yu gave a presentation. He spoke about current research and the progress with the StopFOP trial and gave Board members a tour of the Yu lab.

The Alma Triffitt Book Award

We continued to remember the lovely Alma Triffitt, the late wife of Professor James Triffitt. Once again, thanks to a generous donation from Jim, we gifted our children and young people a book matched to their interest, in celebration of her life.

Helen and Chris attend The Royal Garden Party at Buckingham Palace.

Helen and Chris were invited to King Charles’ Garden Party in celebration of her British Empire Medal. This was King Charles’ first Garden Party but unfortunately was unable to attend. HRH Prince William and HRH Princess Catherine were in attendance, along with other Royals. The highlight of the Garden Party was being presented to HRH The Princess Royal. It was an honour to be able to speak with her about the work of FOP Friends, explain about FOP, and talk about our hopes for the future.

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The University of Salford Project continues.

We continued with our partnership with the University of Salford to develop a tool for Rachel to use, to help her be able to feed herself independently and enjoy the social aspects of eating out. We met again with the engineering and occupational therapy students, to look at the challenge and the project in more detail.

FOP Friends Visits Number 10 Downing Street

Following on from the success of our first debate, FOP Friends was given the

opportunity to have a full debate in the House of Commons. Oliver and Chris

attended the debate, along with Lexi and her parents Dave and Alex Robins, and The Rt. Hon. Mike Penning MP who has worked tirelessly to get our voice heard in Parliament. Oliver and Lexi

were also invited to deliver our petition, demanding government funding into FOP, directly to 10 Downing Street.

Launch of the Adult Rare Bone Network

FOP Friends was honoured and delighted to be one of the founding six patient organisations for the newly formed Rare Collaborative Disease Network for adult rare

bone conditions. Helen and Rachel attended the launch meeting in London, headed

by Professor Kassim Javaid. It is amazing to be a part of this opportunity to improve the care for adults living with FOP.

First, do no harm: Expert reflections on a rare bone disease

It was a privilege to be invited to work with Medics for Rare Diseases, in collaboration with the prestigious Hunterian Museum at the Royal College of Surgeons, to host an evening reception for healthcare professionals, examining the contributions of patients and families to medical advances in FOP.

There were a host of speakers, including Chris, Oliver, and Professor Alex Bullock, speaking on a range of topics. It was an exclusive event which had a real impact.

Guests were able to attend the museum after dark, and medical attendees were also able to see the skeletons of two people who lived with FOP.

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Funding FOP Research

Year on year since becoming a registered charity FOP Friends and its supporters have successfully funded the FOP Research Team at the University of Oxford. This has been achieved in collaboration with FOP France who have also contributed to the Oxford Research Fund via FOP Friends this charity year.

Collaboration with Medics for Rare Diseases and the Student Voice Prize

To raise awareness of FOP with the next generation of medical professionals, FOP Friends takes part in the Student Voice Prize and partner with a student, to support them with writing an essay with a focus on rare diseases. This year’s student chose the article: ‘Turning to

stone: a reflective insight into how a rare disease patient’s health and wellbeing is influenced within our society.’

International FOP involvement

Chris continues his role as chair of the IFOP International Presidents Council working on international FOP projects and meeting regularly with the leaders of all the national FOP organisations from around the world. Although we have not met as a group in-person since

before Covid we look forward to 2024 when we will have the opportunity to meet, in-person, once more at the next IFOPA Drug Development Forum. The IPC work together to tackle and share challenges faced by FOP families the world over.

Fundraising Regulator

FOP Friends maintains its voluntary registration with the Fundraising Regulator the independent self-regulatory body for UK fundraising. The FR

works with member charities, suppliers, and the wider charity sector to encourage commitment to and compliance with best practices in fundraising.

Rare Disease Awareness

We share a series of posts throughout February to show our alliance with other rare disease organisations around the world. We highlight that while each condition may be rare, collectively we are mighty, and we share many of the same challenges. We run a series of media events, articles, #lightupforrare and twitter takeovers as part of the awareness.

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# FunFeet4FOP and Global FOP Awareness

We continued to raise awareness of FOP with our annual campaign, #FunFeet4FOP, a

campaign we launched in April of 2016. We also partnered with the IFOPA to take part in

a Global FOP Awareness Campaign. We shared memes across

social media platforms along with other patient organisations

across the world. We also sold tee-shirts with the updated logo and tagline: Hope. Believe. Wish.

In the media

FOP Friends continues to make use of local and national media where appropriate to raise awareness of FOP and encourage fundraising. We are, however, cautious when working with the media and only “go public” when it truly benefits the FOP community. Members of the FOP community have done some amazing awareness raising of their own by sharing their stories in the media.

Isla and Nicky @ This Morning!

Isla, Nicky and James visited the studio for the popular daytime magazine show This

Morning, sitting on the famous couch, to share their stories of the challenges living with

FOP brings. Isla spoke about her love of horses and how she has gained much enjoyment from being a part of Riding for the Disabled. Nicky spoke openly and honestly about their story from diagnosis, and the heartbreaking challenges she deals with as a rare mum.

Attendance at Conferences and meetings

Genetic Alliance Meeting in London

Chris attended the Genetic Alliance Westminster All Parliamentary Group on Rare, Genetic and Undiagnosed Conditions. The aim of the meeting was to discuss the latest report about coordinating the care of those living with rare conditions.

A further Parliamentary Meeting

We continued to work with the government to get our voices heard about the reality of living with FOP and why funding into research for a treatment and cure is critical for those living with FOP. This time, Nicky and Dr Andrew Rankin represented FOP Friends and attended the meeting, along with Dave and Alex

Robins, and the Rt. Hon Mike Penning MP. They met with the Minister for Heath to discuss further the issues raised in the debate in September. This meeting is then followed up with another meeting in

December, where Professor Richard Keen (RNOH) and Professor Alex Bullock (University of Oxford) attend to share their thoughts, insights and expertise.

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Helen attends IFOPA Board Meeting in Florida

Helen attends her second in-person Board Meeting for the IFOPA, this time in Florida.

Impact and value

We continue to be the first point of contact for our families, often out of hours when a medical professional is not immediately available, and our families need reassurance and direction. We have welcomed a new family to our community and supported them through the confirmation of diagnosis, and subsequently introducing to them to other families who will be their vital network going forward as they learn to live with FOP. We have continued to offer our families specialist mental health support through our partnership with Rare Minds. This provides dedicated counselling for parents, or adults living with FOP, immediate access to counselling, free of charge. This has been made possible thanks to a grant.

We continue to liaise with the team at RNOH to ensure our families have up to date information. We also signpost our families to reminders about the current best practice regarding the flu vaccine and promote the healthcare videos as produced by the FOP specialists in conjunction with the IFOPA.

We worked with the charity The Hydration Foundation, to coordinate the distribution of longstrawed hydration bottles to those in our community who would benefit from it. We managed to arrange for nearly half of our community to receive a kit, free of charge, thanks to The Hydration Foundation.

We worked with FOP specialist dentist Dr Clive Friedman to survey our patients on their experience of dental care. We are continually looking to find ways to improve the care they receive, and dental care continues to be a source or worry and concern for all our families.

We have spent time working with a wheelchair provider and person with FOP, to source a chair which will me their very specific needs as even a regular specialist wheelchair isn’t suitably matched to their needs. This continues to be an ongoing challenge. Now a chair has been sourced, we begin the next battle to arranged funding from the NHS and other sources to pay for the chair.

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Our website is constantly being upgraded, with practical advice for our families and signposts to other excellent charities and organisations which can support them with the daily challenges of living with a complex condition.

Our children were particularly thrilled at Christmas to receive a parcel full of wonderful gifts, which were funded through a RaidTrain on twitch. An anonymous fundraiser hosted an event, which gifted box of Biscuiteers Christmas biscuits, a hot chocolate set, an Amazon gift voucher and a personalised Christmas tree ornament for our children and young people. It was the most wonderful of festive treats.

We continue to coordinate a book for all our children and young people as part of The Alma Triffitt award.

Perhaps most importantly, our families know we are always there for them, whenever they need us.

Fundraisers

We have chosen a small selection of supporters, events, challenges, and activities to illustrate just how mazing our supporters are. We may be a small community, but we make a big difference.

Alanna’s Awareness Day

Alanna’s school marked Rare Disease Day with a special assembly which explained to the pupils about what living with a rare disease means. The school also shared the video: The Same but Different: A Look at Life with FOP from the IFOPA. To help raise further awareness of FOP, Alanna brought in some gorgeous bracelets with a butterfly charm and gave them out to all the class.

Our very own Superheroes

Superhero Series is the UK’s one and only disability sports series for the Everyday Superhero! Isla, who lives with FOP, and her friends Kit and Erin, took part in the Superhero Triathlon at Dorney Lake. Isla demonstrated her warrior spirit, completing her part on her adapted trike. The team raised £1120.

London Marathon for FOP Friends!

Our long-standing supporter Jane finally managed to tick a big event off her Bucket List: she ran the London Marathon for FOP Friends! She received a number of messages of support from the FOP families and these messages motivated her through

the race. She was thankful and honoured to have been able to play her small part in supporting those living with FOP.

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Batchwood Golf Club Charity of the Year

In 2023, Will

Smeulders chose FOP Friends as his charity when he assumed the role of Captain at

Batchwood Golf Club in St. Alban’s. A fabulous fundraiser was hosted by Will, a family friend of Lexi Robins who lives with FOP. A sunny, fun-filled golf day raised over £2000 for FOP Friends. Throughout Will’s year of captaincy, a series of fundraising events were held, including quizzes, games, and raffles. Any ‘fines’

incurred by members also went to his chosen cause. They held golfing events too, including the Lexi Cup. One of the events was fund-matched by local company Cam Well. In February of this year, the members held their final event. The grand total raised by Batchwood Golf Club was an amazing £10,329!

Trek to Base Camp

Lauren, a good friend of the Grant family, had always had a trek to Everest on her bucket list. Lauren and her team headed off to Everest to achieve one of their dreams and thought it would also be a great opportunity to raise some money for their dear friend Ellis and FOP Friends. Lauren and her team raised an incredible £1500 for FOP Friends.

Chiltern 50 Ultra Challenge

Dr Judith Bubbear, one of our FOP specialists at the Royal National Orthopaedic

Hospital, took part in the Chiltern 50 Ultra Challenge this year supporting FOP Friends.

The challenging yet stunning 50k trek took Judith 13 hours and 26 minutes and took

her through some of the most stunning parts of the UK countryside. She raised an

impressive £573 for FOP Friends, and we cannot thank her enough for her time she has dedicated to this remarkable challenge.

Future plans

It's been a tough year for us. Like many other charities, we've felt the pinch from the rising cost of living and global uncertainty. This has led to a significant drop in donations, making it more challenging to fund our vital work.

However, we're not giving up. We've been fortunate enough to build up some reserves during better times. We've invested a portion of these funds in higher-interest savings accounts, generating additional income to

Page |25 of 66

raise some additional funds. These reserves mean also that we can plan to continue funding FOP research and can continue supporting our FOP communities. And while this isn't a long-term solution, it provides some temporary relief.

To ensure we can undertake future projects, and as existing funded projects come to completion, we are looking to revisiting grant and trust applications. An approach that has proven successful in the past and allows us to secure funding, that is not reliant on community fundraising, for crucial initiatives that will benefit the FOP community.

As we look to the future, we're developing a long-term strategy to safeguard the future of FOP Friends and continue our mission to support the FOP community. Soon we look forward to expanding our board of trustees, bringing to the charity new skills and experiences.

We're incredibly grateful for the unwavering support of our donors and volunteers. Their generosity allows us to navigate these challenging times and make a positive impact on the lives of those affected by FOP. We encourage our community to continue fundraising and supporting our efforts. Together, we can overcome these obstacles and build a brighter future for the FOP community.

In the meantime, we remain committed to providing support and resources to the FOP community. We'll continue to advocate for their needs, raise awareness about FOP, and fund research into potential treatments and cures.

Ambition and long-term strategies

Charity objectives

Page |26 of 66

Preventing misdiagnosis

Fundraising

Family support

Medical support

Governance and Structure

Legal Status

FOP Friends is a charitable trust registered with the Charities Commission in England and Wales, #1147704. It was founded in March 2012 and is governed by its “Trust Deed”. The trustees are responsible for the

Page |27 of 66

management and administration of the charity. FOP Friends also registered with The Scottish Charity Regulator (OSCR) in November 2016, SC046950.

Organisational Structure

Ultimate responsibility for the governance of FOP Friends is with the trustees. The trustees are appointed by the founding trustees as detailed within the Trust Deed dated March 2012. The trustees meet in-person (defined as physically or via video conference) at least twice each year. Interim meetings are also held throughout the year. Trustee duties include ensuring compliance with all relevant laws and ensuring that its activities are in accordance with its charitable objectives and operation for the public benefit. Certain functions are delegated to individual trustees, and it is expected in the future there will be several committees with specific responsibilities for the charity. Any change to the Trust Deed including the appointment of trustees is subject to 10 days’ notice of the intention to discuss prior to any meeting.

Trustee recruitment and training

Vacancies for trustees are sought through recommendations gained through appropriate networks and associations of trustees and supporters. Candidates shortlisted are those whose skills and expertise will complement those of the existing trustees. Short-list candidates are reviewed by the existing trustees with a decision to appoint made at a special general meeting. New trustees are provided with a copy of the Trust Deed with any amendments made to it and a copy of the charities latest Annual Report and Financial Statements. All trustees are required to complete a ‘Trustee Declaration’ form. They will subsequently be inducted into the workings of the charity by an existing trustee, including appropriate safeguarding training.

Employment

FOP Friends continues moving towards being a sustainable and professional organisation through employment of appropriate staff.

Trustee recruitment and training

Vacancies for trustees are sought through recommendations gained through appropriate networks and associations of trustees and supporters. Candidates shortlisted are those whose skills and expertise will complement those of the existing trustees. Short-list candidates are reviewed by the existing trustees with a decision to appoint made at a special general meeting. New trustees are provided with a copy of the Trust Deed with any amendments made to it and a copy of the charities latest Annual Report and Financial Statements. All trustees are required to complete a ‘Trustee Declaration’ form. They will subsequently be inducted into the workings of the charity by an existing trustee, including appropriate safeguarding training.

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Statement of responsibilities of the trustees

The charity trustees are responsible for preparing an annual report and financial statements in accordance with applicable law and United Kingdom Accounting Standards (United Kingdom Generally Accepted Accounting Practice).

The law applicable to charities in England and Wales requires the charity trustees to prepare financial statements for each year which give a true and fair view of the state of affairs of the charity and of the incoming resources and application of resources of the charity for that period. In preparing the financial statements, the trustees are required to:

The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy at any time the financial position of the charity and enable them to ensure that the financial statements comply with the Charities Act 2011, the Charity (Accounts and Reports) Regulations 2008 and the provisions of the trust deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.

The trustees for the purposes of charity law who served during the year and up to the date of this report are set out on page 2. The trustees are responsible for the maintenance and integrity of the charity and financial information included on the charity's website. This report was approved by the trustees on 1[st] December 2023 and signed on their behalf by

Chris Bedford-Gay.

Founding Trustee and Chairman

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Financial review

Summary

Gross income totalled £83,617 with £460,242 being carried forward to next charity year. Of the amount carried forward, £125,000 is designated to research; £15,000 to operating reserves; and £183,776 restricted (mainly projects associated with grants and trust fundraising). The charity has no long-term investments. Cash reserves are held in bank deposit accounts.

Income

Income for the year totalled £83,617 and is made up of unrestricted funds from fundraising and voluntary donations together with income from successful grant and trust applications, conference fees and a small amount of interest on savings.

Grants, trusts, and corporate sponsorship

The charity received £10,000 (was £102,529) in grants. An 90% decrease on the previous charity year. This large decrease is due to a combination of events. Firstly last charity year was our FOP Conference where we receive significant sum in financial support from multiple sources, combined with our current focus being on completing existing, already funded, projects before seeking further funding for future projects.

Charitable expenditure

Through the charity year, £0 was spent on funding FOP research, as described above, this is an anomaly due simply to when funding requests were made by the University of Oxford FOP Research team and other research projects, all of which placed our annual spending into our next charity year, therefore outside the scope of this report.

Operating costs of £55,860 include costs associated with fundraising of £5,276 (t-shirts, event places, and support of fundraisers), operation costs of £44,765, £554 in governance costs, and £5,265 costs associated with projects.

Governance costs of £554 include accounting fees, insurance, professional memberships, and costs associated with training and supporting trustees and staff.

Gains and losses

Income from fundraising, voluntary income and fundraising activities decreased by 66% from £219,354 to a total of £73,724.

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Policy on reserves

The trustees’ aim is to maintain reserves in unrestricted funds of £15,000 to cover operational, support, governance costs and unforeseen expenditure over at least a 3-month period.

Designated Funds

The trustees’ aim is to maintain reserves in unrestricted funds of £15,000 to cover operational, support, governance costs and unforeseen expenditure over at least a 3-month period.

Future commitments

FOP Friends remains committed to funding FOP research internationally. The trustees decide where disbursements are made to achieve the aims and objects of the charity. Presently, £125,000 is designated from funds carried over towards FOP research.

Ongoing projects such as the FOP Friends Together newsletter, and updates to the “Supporting a Child with FOP: a practical guide to their learning experience” book are recognised as future financial commitments being funded through restricted grants and trusts awards.

Restricted Funds

A total of £34,453 in funding received in this reporting year has been restricted towards Community Christmas Gifts, Rare Minds Counselling service, FOP Friends “Together” Newsletter amongst other items.

Investments

FOP Friends invested a proportion of its available funds into the CAF Charity Deposit Platform, managed by Flagstone, these funds were placed into two high-interest fixed period savings accounts to take advantage of currently high interest rates.

Independent examiner’s report

I report on the accounts of the charity for the year ended 1st March 2023 which are set out on pages 36 to 43.

This report is made solely to the charity's trustees, as a body, in accordance with section 145 of the Charities Act 2011 and regulations made under section 154 of that Act. My work has been undertaken so that I might state to the charity's trustees those matters I am required to state to them in an independent examiner's report and for no other purpose. To the fullest extent permitted by law, I do not accept or assume responsibility to anyone other than the charity and the charity's trustees, as a body, for my work or for this report.

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Respective responsibilities of the trustees and examiner

The charity's trustees consider that an audit is not required for this year (under section 144(2) of the Charities Act 2011) and that an independent examination is needed. It is my responsibility to:

Basis of independent examiner’s report

My examination was carried out in accordance with General Directions given by the Charity Commission. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence that would be required in an audit, and consequently no opinion is given as to whether the accounts present a 'true and fair' view, and the report is limited to those matters set out in the statement below.

Independent examiner’s statement

In the course of my examination, no matter has come to my attention:

  1. which gives me reasonable cause to believe that, in any material respect, the requirements:

  2. a. to keep accounting records in accordance with section 130 of the Act; and

  3. b. to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Act; have not been met; or

  4. to which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

Independent examiner

P. S. Hutchinson BSc FCA, Chartered Accountant, 246 Park View, Whitley Bay, Tyne & Wear, NE26 3QX

Page |32 of 66

Consolidated statement of financial activities

Notes
Restricted
Unrestricted
2024		 2023
Incoming resources
From generated funds
Voluntary income
2
£
31,475
£
42,249
£
73,724		 £
219,354
Investment income
£
-
£
6,009
£
6,009		 £
1,524
Other incoming
resources
3
£
2,978
£
906
£
3,884		 £
10,535
Total incoming
resources
£
34,453
£
49,164
£
83,617		 £
231,413
Resources expended
Costs of generating
funds
4
£
5,228
£
5,313
£
10,541		 £
6,573
Charitable activities
Research
5
£
-
£
-
£
-		 £
50,535
Events
6
£
-
£
-
£
-		 £
30,483
Awareness
£
-
£
2,462
£
2,462		 £
2,548
Projects
£
-
£
-
£
-		 £
9,650
Operational Costs
7
£
39,080
£
5,685
£
44,765		 £
41,031
Governance costs
8
£ -
£
554
£
554		 £
537
Total resources
expended
£
44,308
£
14,014
£
58,322		 £
141,357
Net
incoming/(outgoing)
resources
-£
12,833
£
38,128
£
25,295		 £
90,056
Reconciliation of funds
Total funds brought
forward
£
196,609
£
238,339
£
434,947		 £
344,892
Total funds carried
forward
£
183,776
£
276,467
£
460,242		 £
434,948

Page |33 of 66

Balance sheet

-
Notes
2024		 2023
Fixed assets
9
£
1,050		 £
1,081
Current assets
Cash at bank
£
462,803		 £
436,823
Debtors
10
£
326		 £
600
£
463,129		 £
437,423
Creditors: amounts falling
due within oneyear
11
-£
3,936		 -£
3,557
Net current assets
£
459,193		 £
433,867
Net assets
£
460,243
£
434,948
Funds
Restricted
12
£
183,776		 £
196,609
Designated
13
£
140,000		 £
140,000
Unrestricted
£
136,467		 £
98,339
£
460,243
£
434,948

Approved by the trustees on 1[st] December 2023 and signed on their behalf by

Alison Acosta Bedford.

Founding Trustee

The notes on pages 35 to 40 form an integral part of these financial statements

Page |34 of 66

Notes to the financial statements

1. Accounting policies

Basis of accounting

The financial statements have been prepared under the historical cost convention and in accordance with the Statement of Recommended Practice: Accounting and Reporting by Charities (SORP 2005) issued in March 2005 and applicable UK Accounting Standards and the Charities Act 2011.

Fund accounting

Restricted funds are funds which are to be used in accordance with specific restrictions imposed by the donor or trust deed.

Unrestricted income funds comprise those funds which the trustees are free to use for any purpose in furtherance of the charitable objects. Unrestricted funds include designated funds where the trustees, at their discretion, have set aside resources for a specific purpose.

Incoming resources

All incoming resources are recognised once the charity has entitlement to the resources, it is certain that the resources will be received, and the monetary value of incoming resources can be measured with sufficient reliability.

Voluntary income is received by way of donations and gifts and is included in full in the Statement of Financial Activities when receivable.

Investment income is included when received.

Resources expended

Liabilities are recognised as resources expended as soon as there is a legal or constructive obligation committing the charity to the expenditure. All expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all costs related to the category.

Costs of generating funds

Costs of generating funds comprise the costs associated with attracting voluntary income and the costs of fundraising.

Page |35 of 66

Governance costs

Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include costs linked to the strategic management of the charity.

Irrecoverable VAT

Irrecoverable VAT is charged against the category of resources expended for which it was incurred.

2. Voluntary income

2024 2023
Donations
£
63,724		 £
116,825
Grants
£
10,000		 £
102,529
£
73,724		 £
219,354

3. Other incoming resources

2024 2023
Conference fees
£
2,978		 £
8,526
Sales
£
906		 £
2,009
£
3,884		 £
10,535

4. Cost of generating funds

2024 2023
Fundraising costs
£
5,276		 £
3,272
Project costs
£
5,265		 £
2,542
Operational costs
£
-		 £
760
£
10,541		 £
6,573

5. Research

2024 2023
UK research
£
-		 £
50,535
International research
£
-		 £
-
£
-		 £
50,535

Page |36 of 66

6. Events

2024 2023
Conference meeting costs
£
-		 £
30,483
£
-		 £
30,483

7. Operational

2024 2023
Salaries
£
39,080		 £
35,666
General expenses
£
2,776		 £
2,480
Repairs and maintenance
£
-		 £
112
Subscriptions
£
2,233		 £
2,150
Bank charges
£
114		 £
149
Depreciation
£
562		 £
474
£
44,765		 £
41,031

8. Governance

2024 2023
Accountancy charges
£
120		 £
115
Insurance
£
434		 £
422
£
554		 £
537

9. Fixed assets

Office equipment
Cost
At 2nd March 2023 £ 3,119
Additions £ 531
Disposals £ -
As at 1st March 2024 £ 3,650
Depreciation
At 2nd March 2023 £ 2,038

Page |37 of 66

On disposals £ -
Charge for year £ 562
As at 1st March 2024 £ 2,600
Net book value
As at 1st March 2024 £ 1,050
At 1st March 2023 £ 1,081

10. Debtors

2024 2023
Accounts receivable
£
-		 £
600
VAT repayable
£
326		 £
-
£
-		 £
600

11. Creditors

2024 2023
Amounts falling due within one year:
Accounts payable
£
2,942		 £
3,480
PAYE and NI
£
531		 £
568
Accrued expenses
£
230		 £
225
Other creditors
£
233		 £
233
£
3,936		 £
4,507

Page |38 of 66

12. Restricted funds

Balance b.fwd Incoming resources Incoming resources Resources expended Resources expended Balance c.fwd
Conference fund £ 102,620 £ - -£ 5,025 £ 97,595
Family getaway £ 7,256 £ - -£ 7,256 £ -
Operational £ 8,375 £ 4,600 £ - £ 12,975
Be Safe at School Book £ 35,170 £ - -£ 5,400 £ 29,770
Charity leaflet £ 246 £ - £ - £ 246
FOP & Me £ 22,741 £ - -£ 10,000 £ 12,741
FOP Video £ 20,000 £ - -£ 11,824 £ 8,176
Alma Triffit Book
Award		 £ 201 £ - £ - £ 201
Engraver Gamer £ - £ 1,062 -£ 930 £ 132
Rare Minds £ - £ 5,000 -£ 2,640 £ 2,360
Together Newsletter £ - £ 5,000 -£ 1,233 £ 3,767
FOP Organisation £ - £ 15,813 £ - £ 15,813
£ 196,609 £ 31,475 -£ 44,308 £ 183,776

The Conference fund represents donations and delegates deposits received in respect of the FOP Conference in May 2022. Operational funds are those restricted to day-to-day operations of the charity.

The Be Safe at School Handbook fund represents grants awarded towards the cost of producing/updating a handbook that families can provide to their child's school to detail best practice procedures for caring for a FOP child throughout their life in education.

FOP & Me funding is for a children’s journal taking them through their journey with FOP, either as a patient or a sibling of a person with FOP. Both the FOP Video and Charity leaflet funds are focused on raising FOP awareness with the FOP Video have a particular focus on awareness and “do no harm” within the medical communities.

The Alma Triffit book award are funds towards the purchase, annually, of a book for every child with FOP within the UK. The fund was setup in the memory of Alma Triffit whose husband, Prof James Triffit is also a long time FOP researcher, being involved in setting up FOP research at the University of Oxford, being instrumental in the FOP gene discovery, and who has continued involvement in the FOP world.

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Finally, the family getaway fund is restricted to providing FOP families with a weekend getaway with all other FOP families in the UK. A chance to be with others in the same situation in a relaxed environment.

13. Designated funds

Balance b.fwd Incoming resources Resources expended Balance c.fwd
Research fund £ 125,000 £ - £ - £ 125,000
Operating fund £ 15,000 £ - £ - £ 15,000
£ 140,000 £ - £ - £ 140,000

The Charity will sometimes raise funds to meet specific objectives, but the donor chooses not to restrict the Charity in how the funds are to be used. These funds are legally unrestricted, but the Trustees choose to designate the purpose for which the funds are to be used as follows:

The Research fund represents monies received which the Trustees have designated to be used to fund research in future years.

The Operating fund represents the higher of £15,000 or 3 months operating costs which is considered to be the safe minimum reserve level as determined by the charity's Reserves Policy.

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Our history (to 1[st] March 2024)

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

2011

Chris elected to 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

January 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

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December 2012

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.

Awarded a grant for £16,000 from GDUK to fund a Charity Administrative

Assistant

December 2013

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 organise 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.

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

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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 Founder and chairman attends IFOPA’s first 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.

BBC’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.

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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 honoured 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 us 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

We 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, many exciting fundraising activities

are planned.

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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.

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

FOP Friends supports the IFOPA competitive research grant

programme which sees FOP Friends providing 25% of the funding towards the “Allosteric inhibitors of ALK2 for FOP therapy” project at the University of Oxford.

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 choose FOP Friends us as beneficiary of their Charity of the Year.

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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. An incredibly positive conference with lots of

exciting developments in the field of research, from all around the world.

April 2016

FOP Friends launch the #FunFeet4FOP campaign in celebration of FOP Awareness Day.

This is the first national (now international) campaign, encouraging supporters to wear #FunFeet4FOP.

The weekend is an incredible success with many people posting photos of their weird and wonderful

footwear.

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 remarkable 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.

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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 organisation was established by Lara Boniface, mum of Jarvis with FOP.

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 an enormous success.

September 2016

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

October 2016

Organised by Margot Charlton for the third year in a row, the charity Gig 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 2nd IFOPA Drug Development Forum in Boston. FOP Friends provides $15,000 towards the event, generating a total $30,000 thanks to fund matching.

Helen and the boys visit Center 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 from 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 receive 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!

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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

Fun in the Forest for FOP Families - In March, over a dozen FOP families are able to enjoy a weekend at Center Parcs Sherwood Forest thanks to funding from Children in Need.

April 2017

The second #FunFeet4FOP event takes place on International FOP Awareness Day, with some fab feet (including a farm animal or two) helping to boost the profile of FOP.

Jo and Jack take on a marathon each, with Jo running in London and Jack in Southampton.

May 2017

Helen and Chris attend the University of Oxford Vice-Chancellor’s Circle evening. The invite is extended to us to thank us for the support we, as a community, give to the FOP Research team at Oxford. Helen and Chris are honoured to represent all the families and friends.

June 2017

FOP Friends partner with Genetic Disorders UK.

Savills continue their support by holding a Golf Day and raising over £165.

July 2017

Sophie, Becky, and friends host a Garden Fundraiser and raise £670, taking FOP Friends of Isla’s fundraising page to over £40,000

Stewart and friends cycle over 500 miles across Scotland to raise awareness for FOP.

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August 2017

Trekking an impressive 800 miles, Rebecca completes her Appalachian Trail journey, raising an incredible £2,000 along the way.

September 2017

Eight runners take on the Great North Run, raising over £5,000 for FOP research, with special support from six different Nationwide branches.

October 2017

Chris attends the 3rd IFOPA Drug Development Forum in Sardinia, Italy, and opens the event with his inspirational ‘Along for the Ride’ speech.

FOP Friends is proud to be listed and recognised in the 2016/17 The Oxford Thinking - The Campaign for the University of Oxford report, as one of their valued donors.

The charity is awarded Runner-Up as Charity of the Year at the Altrincham & Sale Chamber of Commerce Awards.

November 2017

Bex completes a 61-day dryathlon, raising a sparkling £500 in the process. Meanwhile, Amy celebrates her 50th Birthday in style by jumping 855ft from the top of Las Vegas’ Stratosphere Tower and raising an incredible £2,100.

FOP Friends feature on the University of Manchester’s Volunteer Hub to help raise awareness and recruit student volunteers.

FOP Friends is also awarded Charity of the Week in the “The Week” magazine, December 2017

FOP Friends present their tree of thanks for Children in Need at the annual St. Alban’s Church Tree Festival. Oliver's little brother, Leo, contributes his own ‘Little FOPers’ trees.

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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. It is awarded by The Prime Minister, Downing Street.

February 2018

Chris attends the 7th edition of the EURORDIS Black Pearl Awards alongside other FOP leaders from Italy, Germany, and France.

March 2018

FOP Friends are pleased to announce that they have been awarded a grant from the

Big Lottery Fund to help fund their 2018 UK FOP Conference and Family Gathering.

University of Manchester Boat Club take on a 24hr row in aid of FOP, raising £1023.77. Meanwhile, Natalie completes the inaugural London Landmarks Half Marathon, raising £350.

Chris presents at the Genetic Disorders UK 2018 Leadership Symposium. His ‘In it to win it! Changing the future for children born with fibrodysplasia ossificans progressiva (FOP)’ presentation focuses on building a sustainable, small charity, supporting patients and families and ‘punching above your weight’ in pursuit of your charity’s ultimate goals.

April 2018

Jane Deane takes on the Manchester Marathon raising £1,180, while DAC Beachcroft LLP holds a dress down day at work to raise FOP awareness and collects £185.

T-UK Stockport Taekwon-Do choose FOP Friends as their Charity of the Year and Chris is thrilled to attend their evening dinner and accept a cheque of £613.

Chris is honoured to receive a letter from Oxford Thinking, which thanks FOP Friends for the generous funding of FOP research at Oxford University.

FunFeet4FOP is an immense success for the third time, with lots of fun feet making an appearance. We are grateful and honoured to see the BalletBoyz choose to help raise awareness for FOP! Hummingbird Bakery in Guildford supplies cakes for a #FunFeet4FOP bake sale, which raises over £230.

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Mick Henry runs the Connemara Marathon for Friends of Rion, while Sharon Moore takes on the Newport Marathon for Friends of Annalese.

May 2018

William Jones, 11, has supported FOP Friends through lots of different

fundraisers and decides to hold another sweet stall to raise funds and awareness

for FOP.

Manchester University Boat Club decides to fundraise for us again, with the team taking on the Manchester 10K.

Our third Conference and Family Gathering takes place

and is a resounding success! With talks from the world leading FOP experts,

workshops, and clinical consultations – everyone in attendance has a wonderful time connecting with one another.

June 2018

FOP Friends receives a grant from Jeans for Genes to help fund the 2019 FOP Family Respite Weekend.

Julian cycles over 100 miles, from Wolverhampton to Aberdovey, to raise funds and awareness for FOP. Belinda Davis and our wonderful friends at Dell Park Farm Windsor provide parking at the Royal Wedding in aid of FOP Friends & raise £644!

July 2018

The wonderful Melissa and Freya both take a ‘Chop for FOP,’ raising funds for FOP and donating their hair to the Little Princess Trust.

We are thrilled to unveil our new FOP Friends’ leaflet.

August 2018

Alexis who completes the Three Peaks Challenge for FOP Friends

September 2018

Harry, Jack, Judith, Alistair and one of our FOP specialists Dr Bubbear all take on half marathons across the country.

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Twelve runners head to Newcastle to take on the Great North Run this year, while Josie Heade runs an impressive 100k to raise awareness and funds for FOP.

Manchester Round Table & Cheadle & Gatley Ladies Circle host the first ever Cheadle Big Charity Pub event, with 25% of the profits going towards FOP Friends.

Wonderful members of Team Isla organise a charity ball exceeding £2500!

October 2018

Gig for Isla 5 is another success - the dedicated community on the Isle of Wight dance the night away to the fabulous L & M Band, raising thousands of pounds for FOP research.

We drum up some local support in Manchester with Slater Heelis holding a Dress Down Day; Altspace Coworking Office holding a brilliant bake-off; and COS Bookkeeping holding a charity raffle.

November 2018

Chris arrives safely in Baltimore for the International FOP Association (IFOPA)'s 30th Family Gathering.

Our first-ever Christmas card campaign is launched.

Oliver visits Sale Grammar School, where he speaks to sixth form students for an hour about FOP.

FOP Friends is acknowledged by the University of Oxford as one of their most committed supporters.

December 2018

We launch our FOP Friends beanie hats.

Oliver gives an amazing presentation talking about FOP & Me, to the colleagues of Regeneron UK at their Christmas conference. He receives a standing ovation – he’s following in his dad’s footsteps.

Boxing Day sees a wonderful group get dressed up and visit 35 pubs, Irish dancing whilst raising money for charity. A whopping £973 is raised for FOP Friends.

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January 2019

We launch our Supporter Spotlight programme. We are thrilled to be able to celebrate the many people who have joined us on our journey to find a treatment and a cure for FOP.

Swap4FOP. Isla’s godmother has a simple strategy: take a bunch of friends each bringing a few unwanted items/gifts, add an entry fee, a raffle, and some fizz = fun night, recycles, take away some treasure and raise much needed funds for #FOPFriends. A fabulous night was had by all, and the event raises a whopping £800!

February 2019

We launch Facebook Fundraiser – supporters can now raise money and awareness for FOP on Facebook for their special celebrations.

Helen receives acknowledgement from The Duke and Duchess of Sussex, coincidentally on Rare Disease Day.

FOP Friends donate $15,000 towards the IFOPA ACT for FOP Grant program helping to

fund novel FOP research.

March 2019

FOP Friends runs its second FOP Family Weekend. They take children with FOP and their families for another weekend together at Center Parcs.

April 2019

People say they would walk over hot coals for

their kids – well we did! #FunFeet4FOP and #FireWalkforFOP combine for a most fabulous fundraiser. Twenty-two firewalkers including two FOP families, two local councillors from Trafford, Manchester (Amy Whyte & Steve Longden) and FOP nurse

specialists Jackie all burn their toes to raise awareness for FOP.

May 2019

FOP Friends releases “Supporting a Child with FOP: a practical guide to their learning experience” This book is made possible thanks to a generous grant from Regeneron Pharmaceuticals. The book is an essential and informative guide for anyone supporting a child with FOP, offering clear information and advice to

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parents and teachers to help a child with FOP navigate their school journey as well as their life beyond the classroom.

Helen and Chris are delighted to represent FOP Friends at the Oxford University’s Vice-Chancellor’s Dinner. They receive the invitation in recognition of the charity’s contribution to their excellent FOP research team, led by Dr Alex Bullock.

June 2019

Helen and Chris are delighted to win the 2019 Jeannie Peeper

Award for “Outstanding International Leadership”. The award recognises their exceptional commitment to the FOP community through their leadership, service, family support, fundraising, and awareness-building, both in the UK and world-wide.

July 2019

In July, Oliver’s family are devastated when Grandma Ann passes away suddenly. Ann was well-known and well-loved in the North-East where she held monthly line dancing social events to raise both money and awareness. Over the years, Ann’s line-dance fundraisers have raised over £40,000 for FOP Friends. She is sadly missed. Donations to FOP Friends are requested in lieu of flowers.

Sept 2019

FOP Friends have another team of fundraises take part in the Great North Run including FOP specialist, Doctor Bubbear.

November 2019

The IFOPA Drug Development Forum in Florida. Whilst attending the

Drug Development Forum, Chris also runs the meetings for the national FOP leaders from around the world, followed by taking the stage

as part of a panel of patients and parents talking about FOP and answering questions.

Hannah, who first worked at FOP Friends in 2015 says farewell as she moves to pastures new to pursue a career in psychology.

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December 2019

Amish Patel sees 2019 out in style when he takes part in a skydive for his brother Hamish, who has FOP. Amish, who lives in Queenstown, New Zealand takes a leap of faith and completes a 12,000 ft tandem skydive for Hamish who lives in the UK.

January 2020

We are most thankful to the amazing team at “And Digital” in Manchester,

led by Jamie and Mike, who donate their time and skills for free. The new

website has all the information you need about FOP as a condition, and all about FOP Friends as a charity. We can offer downloadable resources to support fundraisers as well as information for people who are coming to terms with a new diagnosis. Perhaps most importantly, there is information for people living with FOP in the case of an emergency including the latest ICC medical guidelines.

February 2020

Chris attends the IFOPA in-person board meeting in Philadelphia as part of his role at the IFOPA. Whilst there he attends an early screening of the Tin Soldiers documentary in which he, Oliver, and FOP Friends’ trustee Nicky with her daughter Isla all feature.

During his visit, Chris and his fellow IFOPA board members have a guided tour of the Mütter Museum where two FOP skeletons are now displayed. Harry Eastlack, a resident since 1973, was joined by Carol Orzell in May 2018. It was Carol’s wish to donate her body to be displayed next to Harry to assist future surgeons and medical professionals – her only request: that her jewellery collection goes with her!

March 2020

The global pandemic begins. The impact of Covid-19 on the FOP community as well as the wider world has yet to be realised.

April 2020

Global FOP Awareness Day. We work together with other FOP patient groups around the world by sharing facts to raise awareness of FOP and to educate people about the condition.

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May 2020

As the world comes to a standstill, our conference is cancelled, another casualty of Covid. We are incredibly disappointed. We create a message of hope for the community by asking friends, medical professionals, and researchers to create a message of unity for our followers. We share it across our social media platforms and around the world.

July 2020

We celebrate reaching the milestone of 3000 Facebook followers.

FOP Friends supports the first ever Gene Therapy research programme with the IFOPA

as part of the in pursuit of a cure campaign.

We host the StopFOP webinar, with Professor Keen and Professor Alex Bullock.

Oct 2020

We are delighted to be able to support two more students as part of the Find-aCure student essay competition. One student focussed on FOP, while the other discusses Progressive Osseous Heteroplasia (or POH) the other rare condition we support.

November 2020

Chris is filmed against a green screen for an important FOP CME Video produced with Med Scape aiming to educate 250,000 Health Care Professionals about FOP.

Jan 2021

Covid support continues. We continue to update the website as and when the guidance changes, as well as reaching out to families to ensure they have all the information they need.

Feb 2021

IFOPA Virtual Board meeting. The Board meeting is held virtually across two days, a basket of treats is sent to keep Chris well fed and watered for the event!

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We join with other rare disease organisations around the world for rare disease day, to show that whilst FOP may be rare, we are a small part of a mighty rare

community. We share facts about rare diseases and the battles patients face to get the diagnosis, treatments and support they need.

March 2021

The research team at the University of Oxford send us their latest update, explaining how our donations to their team are making a real impact.

April 2021

We take part in the first Global FOP Awareness Day, uniting with other FOP patient organisations around the world. We all share the same facts and stories on social media, with a united brand. We also launch the t-shirt for us all to be as one. We are

StrongerTogether.

We also hold our #FunFeet4FOP campaign and see people all around the world sharing photos of their fabulous feet! Check out these funky socks being worn by fire-fighters in Australia!

June 2021

Thanks to a generous donation from Professor James Triffitt, honour of his late wife Alma, we launch the Alma Triffitt Book Award. This will be an annual event where we will gift a book to our children and young people living with FOP and POH. Books will be presented in June, in memory of Alma’s birthday.

September 2021

As we return to ‘normal’ after the pandemic, we are thankful to our many runners who take part in organised events to raise money for FOP Friends. We have runners across the UK, from London to Newcastle. Our largest team was our 15-strong Great North Run team. Trustees Rachel and Fiona both take part in the Manchester Marathon.

We make another attempt to launch a petition to get the UK government to dedicate funding to FOP research. The petition achieves the required 100,000 votes required for debate.

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November 2021

As part of World Radiography Day, we shared key images of FOP toes to alert radiographers to one of the key diagnostic features of FOP. We publish an article in the Society of Radiographers’ magazine to explain how sonographers and radiographers can assist with early diagnosis.

An inability to say no, sees Chris join the Find-a-Cure Patient Group Engagement Committee (PGEC). The PGEC provides insight, thoughts and guidance on issues faced by the rare disease community.

December 2021

Chris attends Parliament to listen live in the debating chamber to the debate on FOP, with 7 MPs talking on-behalf of FOP patients in their constituencies. Alex, David, and Lexi Robins who were instrumental to the success of the petition meet MPs.

February 2022

Trafford Council agree to light up the town hall in blue to join with iconic buildings around the world: uniting to raise awareness of rare diseases. Oliver spoke with representatives from the council about living with FOP. We are hopeful this will become an annual event.

We continued to raise awareness of FOP within the medical community by taking part in the University of Glasgow “Rare Bone” Webinar Series as part of their rare disease programme. This coincided with rare disease day.

March 2022

Chris attends his last meeting for the IFOPA as a Board member, as his term comes to a close. Due to ongoing concerns regarding Covid, the meeting is held virtually once more.

We switch fundraising platforms to Enthuse, after the sudden and unexpected closure of Virgin Money Giving.

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Chris attends a virtual NICE scoping meeting, as we continue to learn more about what the approval process for palovarotene will look like.

Chris attends a virtual meeting, led by Professor Matt Brown, about Genomics England and their vision for the next few years. Professor Brown is also a FOP expert who was instrumental in the FOP gene discovery.

We partner with Rare Revolution Magazine to allow us to increase our following and raise awareness of FOP with a wider audience. Our feature on Takeover Tuesday sends our charity and cause global.

April 2022

During the month of April, we worked hard as a charity and as part of the FOP community to raise awareness about FOP.

Oliver, along with Luciana and Chris, delivered a very impressive presentation to Ipsen. He shared his experience of living with FOP from a young age and provided great unique insight into his daily life.

Helen is invited to take part in a virtual presentation to paediatric endocrinology

students as part of Great Ormond Street Hospital’s Learning Academy. Alongside Professor Keen, Dr Abou-Ameira and Dr Chesover, Helen gives a presentation about her family’s journey to diagnosis and how they are learning to live with FOP. She also answers questions as part of the panel discussions.

23[rd] April sees our FunFeet4FOP campaign again. The campaign is now global, with people around the world sharing photos of their fun or wacky toes to raise awareness of one of the key diagnostic features of FOP: the turned in big toe. It’s not just for people – pets join in too!

Helen gives a virtual presentation to radiology students at Canterbury Christ Church University.

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May 2022

We welcomed family, friends, and speakers from around the world for our 4[Th] Conference and Family

Gathering. We had a wide range of presentations and workshops, as well as lots of laughs and catch ups over the 3-day event. It was a weekend filled with energy and once again reminded us of the heart and soul the FOP community has.

Stephen Fry sends a video to open our conference and welcome our friends from all around the world.

June 2022

Helen, one of our trustees and mum to Oliver, received a British Empire Medal in the Queen’s Jubilee Honours List. The award was given to commend Helen for her services to those living with FOP and their families. She received her BEM from the Lord Lieutenant of Manchester at the presentation ceremony at The Monastery and also invited to one of the Queen’s Garden Parties at Buckingham Palace in 2023.

We are delighted to announce on social media that, to date, FOP Friends has raised £1.5million for research, project, and family support. This is down to the love, commitment, and dedication of our small but mighty community. #HopeWins

We celebrate 10 years of being a registered charity. We have come such a long way, but there is still more work to do…

Leo and Harry take part in a research project, commissioned by Alexion and Rare Revolution, to establish the impact of living with a sibling who has a rare condition. Findings are to be reported later in the year.

Jessie Tebbutt, dentist, who attended our conference in May, shares her thoughts and learning from the experience in the British Dental Journal, raising desperately needed awareness of FOP within the professional dental community.

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November 2022

The FOP Burden of Illness study, which was released a few weeks ago, has now been published as a Plain Language Summary. This study outlines the complex implications of living with FOP, and how it impacts every area of a person's life. A big thank you to everyone who contributed to the survey and shared their experiences. FOP Friends was proud to be a part of such an important study and to have the opportunity to work alongside world class patient organisations and medical professionals.

Wishing Chris safe travels as he heads off to Dallas, Texas, for the first in-person IFOPA Drug Development Forum since COVID. A welcome chance to talk once again in-person with FOP researchers, drug developers, and clinicians from around the world.

We start our project with the engineering department at the University of Salford to develop a tool to assist those living with FOP.

December 2022

Chris flies to Paris to participate in Ipsen’s Global Patient Centricity advisor board. Helping inform Ipsen’s approach to ensuring patients are the centre of the drug development journey.

We take part in our second Tuesday Takeover with Rare Revolution Magazine to raise awareness of progressive osseous heteroplasia, POH. POH is the sister condition to FOP, and we support families living with the condition as part of our mission to support families.

Helen receives her British Empire Medal at The Monastery, Manchester, with her family. The award is present by the Lord Lieutenant of Manchester on behalf of Her Majesty the Queen who sadly passed away earlier in the year.

After combined efforts from our charity and our supporters

throughout the year, we were able to donate $60,000 to IFOPA In Pursuit of a Cure campaign. Providing further funding toward Gene Therapy research and the IFOPA ACT for FOP grant programme.

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January 2023

The report, for which Leo and Harry shared their experiences, is released. The report by Rare Revolution and Alexion details the impact of rare diseases on siblings. Anonymous quotes from their experiences are included in the final publication.

We were honoured to host a StopFOP webinar with a fabulous panel of professionals. StopFOP is an academic clinical trial of a treatment discovered by the FOP Research team at the University of Oxford. Marelise Eekhoff, MD, PhD, Amsterdam University Medical Center and Alex Bullock, PhD, University of Oxford, gave a brief overview of the StopFOP

Phase II clinical trial. Dr. Richard Keen, Principal Investigator for the UK site, explained what participation in the trial would entail for those in the UK.

February 2023

Granada News for Rare Disease Day

Oliver, Rachel, and Avi shared their story of living with FOP for a Granada News report for Rare Disease Day. The report further raises awareness of FOP and Rare Diseases. The segment was broadcasted on Granada News, and we were very excited to expand and spread awareness on television broadcast.

Trafford Council Lights Up for Rare Disease Day. FOP Friends collaborate with Trafford Council showed their support for those living with rare diseases by lighting up their town halls as part of the Global Chain of Lights. Oliver and Eddie travelled around the

borough to see them. We showed great gratitude to the buildings team at the council for making it happen.

As part of Rare Disease Day, trustee Nicky shares her diagnosis story to a global audience.

March 2023

Oliver gives another impactful presentation, sharing his story about living with a rare disease. Chris reflects on the challenges of being a rare parent and patient organisation.

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Helen attends her first meeting for the IFOPA as a member of the Board. This is the first time she has met many of the team in real life! As part of the Board meeting, a visit to the University of Massachusetts is arranged. Helen meets Professor Paul Yu and hears promising research updates.

April 2023

April brings our annual Global Awareness campaign. We share photos of fun feet from around the world in

continuation of our #FunFeet4FOP awareness campaign.

May 2023

FOP Friends trustee Nicky, Isla and James visit the UK TV show, This Morning, to chat about living with FOP and raise awareness of the condition. Their appearance also generates a flurry of donations.

Helen and Chris were invited to King Charles’ Garden Party in celebration of Helen’s

British Empire Medal. It was an honour to be able to speak with Her Royal Highness The Princess Royal about FOP.

June 2023

We were also delighted to receive a letter of thanks from HRH

King Charles III and Queen Camilla, thanking us for our good wishes on the occasion of their Coronation.

June 2023

We remember Alma Triffitt this year once more, with our children and young people receiving their book.

Chris is back in London, this time for the Genetic Alliance Westminster All Parliamentary Group on Rare, Genetic and Undiagnosed Conditions. The aim of the meeting was to discuss the latest report about coordinating the care of those living with rare conditions.

Oliver gives a presentation to his school, sharing his experience of living with FOP. His good friend Rachel came along to share her story and to provide some moral support!

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July 2023

Another meeting with the students of Salford University to move our adaptive device project forward. We are joined by Rachel, her mum Julie, and her carer.

August 2023

On a detour from a family holiday we make a visit to the FOP research lab in Philadelphia, and met with Professor Kaplan and Professor Shore.

Isla demonstrated her warrior spirit, taking part in the Superhero Triathlon with her friends Kit and Erin.

September 2023

Oliver’s brother features in an article about the challenges of having a sibling with a complex condition and what it means to be a young carer.

Oliver and Chris attended a debate on FOP in the Houses of Parliament. Along with Lexi and her family, they also deliver a petition demanding government funding into FOP to 10 Downing Street.

November 2024

Helen attends the Kids to Adultz expo in Manchester. She raises awareness of FOP with companies and professionals, and also looks at solutions available for those living with a disability.

Chris attends the NICE Conference in Manchester. There were focusses on improving patient care, optimizing resources, and leveraging technology.

Helen attended a training session, led by Beacon, to improve the charity’s communications. This was held at the Royal Institution in London. As well as being incredibly useful content, it also gave Helen the opportunity to network with others in the rare disease space.

Andrew and Nicky attended a meeting in London, to meet with the Minister for Heath, to discuss further the issues raised in the debate in September, and the challenge those living with FOP face every day.

Rachel and Helen were honoured to represent FOP Friends at the

Adult Rare Bone Disease Collaborative Network Launch. This is an initiative to provide improved and coordinated care for adults living with a rare bone condition.

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December 2023

Chris continues the conversation with The Right Honourable Mike Penning about the need for funding for research into FOP. This time, Professor Keen (RNOH) and Professor Bullock (Oxford University) bring their views and insights.

Engraver Gamer and their friends hold an online

gaming fundraiser to buy treats for the children. Our children receive beautiful handiced biscuits, a hot chocolate set - and a gift card too!

January 2024

Helen attends an Occupational Therapists’ Conference at Salford University to support the students giving a presentation on FOP.

February 2024

It was a privilege to be invited to work with Medics for Rare Diseases, in collaboration with the prestigious Hunterian Museum at the Royal College of Surgeons, to host an evening reception for healthcare

professionals, examining the contributions of patients and families to medical advances in FOP.

Helen attends her second Board Meeting with the IFOPA, this time it is in Florida.

Chris participates in a virtual conference for the emerging, European Alliance for FOP, a new Europe wide (and UK) group focusing on FOP activies within Europe and the rare disease landscape.

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Thank you (March 2023 – February 2024)

We would like to acknowledge our ever-growing supporters. A list that we hope will grow year on year.

FOP National Organisations

FOP France Trusts / Grants The Zochonis Charitable Trust Jeans for Genes Corporate Supporters Skillsarena Donors of time and resources Stephen Fry: Narrated FOP Animation Skillsarena: Director’s time Foliozine: FOP Friends Logo Community / Clubs and Associations Manchester Round Table Royal Northumberland Yacht Club Cheadle & Gatley 41 Club Engraver Gamer

Fundraisers

We would like to thank everyone who undertook a fundraiser or personal challenge to raise awareness and funding for FOP Friends.

Please accept our apologies if we have omitted anyone. If you notice any omissions or would like to be removed, please contact us.

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