**ANNUAL REPORT & FINANCIAL STATEMENTS YEAR ENDING 1[ST] MARCH 2023**
Charity Commission for England & Wales #1147704 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
- We are committed to funding medical research to realise a cure for FOP and related conditions; to understand how we can prevent it and improve the life and well-being of those who are afflicted by it.
- We respect the integrity, ambition, and interests of all FOP Patients.
- We strive to be both a haven and champion for FOP patients and their families, a centre of excellence for the provision of information on medical research, diagnosis, treatment and care, and participation in clinical trials.
- We shall act always with honesty, professionalism, and ethical awareness.
- We shall work collaboratively with medical researchers and clinicians, patients and families, our donors, and supporters to realise our Vision and complete our Mission.
## 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
## Registered
(founding trustee)
## Trustees
Fiona White
John Lever
Helen Bedford-Gay
March 2012
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
## 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 ..........................................................................................................................10 Trustees ................................................................................................................................................11 Christopher Bedford-Gay - Founding Trustee and Chairman .................................................................11 Alison Acosta Bedford - Founding Trustee ...........................................................................................12 Rachel Almeida – Founding Trustee ....................................................................................................12 Fiona White - Trustee.........................................................................................................................13 John Lever - Trustee ...........................................................................................................................14 Helen Bedford- Gay – Trustee .............................................................................................................14 Nicky Muller – Trustee .......................................................................................................................15 Meeting Charity Commission guidelines..................................................................................................16 Our principal objects ..........................................................................................................................16 Research Highlights ...............................................................................................................................17 University of Oxford ...........................................................................................................................17
IFOPA Drug Development Forum ........................................................................................................18 UMass Gene Therapy Update .............................................................................................................18 How we raised our money......................................................................................................................19 How we spent money raised ..................................................................................................................19 Achievements........................................................................................................................................20 10 Years as a Registered Charity .........................................................................................................21 Funding FOP Research........................................................................................................................21 FOP Friends Conference and Family Gathering ....................................................................................21 Collaboration with Medics for Rare Diseases and the Student Voice Prize .............................................22 International FOP involvement ...........................................................................................................22 Fundraising Regulator ........................................................................................................................22 Rare Disease Awareness .....................................................................................................................22 #FunFeet4FOP and Global FOP Awareness .........................................................................................22 In the media ......................................................................................................................................23 Attendance at Conferences and meetings ...........................................................................................23 Impact and value ...................................................................................................................................25 Supporting families ............................................................................................................................25 Fundraisers ...........................................................................................................................................26 Cycling for a cure ...............................................................................................................................26 Travelling far to fundraise, the Boston Marathon .................................................................................26 The Windlesham Picnic ......................................................................................................................26 Team Lenny’s Crowdfunder ................................................................................................................26 Simon Sings for Alanna .......................................................................................................................27 Superhero Triathlon ...........................................................................................................................27 Paddle the Thames ............................................................................................................................27 Great North Run ................................................................................................................................27 Raid Train Fundraiser .........................................................................................................................27 Little Lexi’s Big Party ..............................................................................................................................28 Leo and Eddie complete the Local Landmarks around Sale ...................................................................28 Page |4 of 66
Future plans ..........................................................................................................................................28 Ambition and long-term strategies .........................................................................................................29 Charity objectives ..............................................................................................................................29 Preventing misdiagnosis .....................................................................................................................29 Fundraising........................................................................................................................................29 Family support...................................................................................................................................30 Medical support.................................................................................................................................30 Governance and Structure .....................................................................................................................30 Legal Status .......................................................................................................................................30 Organisational Structure ....................................................................................................................30 Trustee recruitment and training ........................................................................................................31 Employment ......................................................................................................................................31 Trustee recruitment and training ........................................................................................................31 Statement of responsibilities of the trustees ...........................................................................................32 Financial review.....................................................................................................................................33 Summary...........................................................................................................................................33 Income ..............................................................................................................................................33 Grants, trusts, and corporate sponsorship ...........................................................................................33 Charitable expenditure.......................................................................................................................33 Gains and losses ................................................................................................................................33 Policy on reserves ..............................................................................................................................33 Designated Funds ..............................................................................................................................34 Future commitments .........................................................................................................................34 Restricted Funds ................................................................................................................................34 Investments.......................................................................................................................................34 Independent examiner’s report ..........................................................................................................34 Our history (to 1[st] March 2023)...............................................................................................................44 Thank you (March 2022 – March 2023) ...................................................................................................66 Trusts / Grants ...................................................................................................................................66 Page |5 of 66
Corporate Supporters ........................................................................................................................66 Donors of time and resources .............................................................................................................66 Community / Clubs and Associations...................................................................................................66 Fundraisers........................................................................................................................................66 Page |6 of 66
## 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.
## Introduction and Chair’s Statement
In 2009, I received the devastating news that my eldest son, Oliver, who was then just one year old, now 14, had been born with Fibrodysplasia Ossificans Progressiva (FOP). Following Oliver’s diagnosis, I began researching the
condition to find that FOP was such a rare disease that there was no charity in the UK dedicated to raising money for research into treatments and hopefully a cure.
Along with my wife, family, and friends, we ran fundraising events to support research and raise awareness of FOP. Through this, we encountered barriers to accessing further help and funding from companies and organisations, so we decided to become a fully registered charity. We received full charitable status in 2012.
In June 2022, we celebrated our 10th birthday. In these ten years we have grown from ‘mum and dad’ fundraiser, to the nationally and internationally respected charity we are today. In recognition of the charity’s success, we have been awarded a Points of Light from Number 10 Downing Street; the IFOPA International Leadership Award; runner up as Altrincham’s Small Charity of the Year; and Helen was awarded a British Empire Medal for services to charity.
This journey though is not just about us; it's about the community rallying together, and the shared determination to make a difference, and the belief that, even in the face of rare challenges, we can create a lasting impact.
We have had many successes with grants and trusts fundraising, as well as continued fundraising from FOP families, friends, and the public. Grants allow us to offer much needed additional support to our families who are facing daily challenges when living with FOP. They also allow us to develop resources and materials. All whilst protecting “fund raised” money of which we are proud to say 98% of which goes directly to funding FOP research and supporting families.
We are regularly invited to contribute to advisory panels, both as parents of a child with a rare condition, but also to guide and support others wanting to set up their own charity. We continue to go from strength to strength and have even been chosen as “charity for the year” by several high-profile organisations. I am shortly ending my term on the Board of the IFOPA, a term of 11 years, although I will continue to Chair the International President’s Council, bringing together all the national FOP organisations from around the world.
It is important we continue to build on our international connections as in the quest to find a treatment and a cure, we truly are stronger together.
We continue to raise awareness of FOP to aid early diagnosis preventing often-devastating progression of the condition, to make our annual fundraising target easier to reach, to support families living with FOP, and to continue to bring the FOP community together.
It has taken dedication, hard work, and time to get this far but we still have a long way to go. We still don’t have a game changing treatment or cure for our loved ones, so we continue to push forward. There is still a great deal of work to be done to make our vision a reality. However, with continued support, we will get there, and we will change the lives for not only Oliver but also the other families affected by FOP, both now and in the future.
But we could not do this alone so I would like to extend my personal thanks to all our supporters who continue to fund our work (through events, sponsorship, or direct donations). Without your tireless campaigning, fundraising and support we could not do what we do. You keep hope alive for all those who are touched by this terrible condition.
Chris Bedford-Gay, Founder and Chairman of FOP Friends.
## 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.
## Trustees
There must be at least three trustees. Except for the first 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
- 1[st] Class BSc Honours Degree, Computing for Business.
## Experience
- Software engineer and consultant at GlaxoSmithKline.
- Software engineer at Defence Evaluation Research Agency.
- Technical Director at Turtlez Ltd (10 years).
- Chief Technology Officer and Director at Skillsarena Ltd (current).
## 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
- BSc Honours Degree, Mathematics, University of Sheffield.
- CGMA Chartered Institute of Management Accountants.
## Experience
- Finance Business Partner UK Biobank, a large-scale biomedical database and research resource.
- Over 16 years of finance experience in social housing.
- Demonstrated expertise in long-term financial planning as the Treasury and Investment Manager of a housing association with an annual turnover exceeding £60m.
## 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.
## Education
- BSc Honours Degree, German and Law, University of Surrey.
## Experience
- International trade shows.
- International economic research charity dissemination conferences.
- Director of Events (current) – leading a team to deliver 40 education conferences per year with direct responsibility for a £2.5m annual turnover.
## 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
- BEd. (Hons.) Degree in primary education.
- National Professional Qualification in Senior Leadership.
## Experience
- Classroom teacher across Key Stages 1 and 2.
- Advanced Skills Teacher - supported schools with curriculum development and teaching and learning.
- Primary School ICT Manager.
- Lectured at Newcastle University – OFSTED.
- Lectured at Leeds University - Teaching Students.
## 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 Brasil and Dr. Patricia Delai to update and translate the guide for families in Brasil.
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
- BA (Ed.) QTS Hons. Dunelm
## Experience
- Classroom teacher across Key Stages 1 and 2, with experience of KS1 leadership.
- Fulbright Exchange Teacher to USA.
- Teacher at Manchester Hospital School 2020 – 2022.
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
- 1st Class Management degree from University of Brighton.
- More recently completed various Marketing courses around social media, speaking engagements, event management, digital marketing.
## Experience
- After graduating, Nicky worked for the UK charity The Duke of Edinburgh’s Award where she was a Marketing Coordinator and managed events and a large show trailer that travelled the UK. The last 11+ years have been spent as a marketer within the IT industry with a wide variety of experience in campaign management and field marketing.
## 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.
## 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
## Professor Bullock Recognised
Our very own Professor Alex Bullock is named outstanding mentor in 2022 awards. Professor Bullock, who leads our FOP Research team at the University of Oxford, was described as “ _an outstanding mentor, leader, and scientist…_ ” and is known amongst all who work with him as a truly exceptional mentor. When his colleagues describe him as “ _…one of the best supervisors/mentors in the department, and likely the entire University…_ ” we are thankful he is leading the FOP Research team we fund.
## Stop FOP
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.
## A new lab
Whilst renovations are taking place at the FOP research teams original lab they are relocated into a temporary, but fantastically well-equipped alternate lab at the University of Oxford. During a visit arranged for member of the FOP community we had the change to take a tour around the lab. Finding out more about the work the team are doing.
## FOP Friends UK Conference and Family Gathering
The Oxford Team attended FOP Friends UK Conference and Family Gathering taking place in Manchester. They present their latest research and give our FOP families a chance to meet and chat with them throughout the conference.
## IFOPA Drug Development Forum
The IFOPA held it’s first in-person Drug Development Conference since Covid. It was held in Dallas, Texas and provided the opportunity for researchers, clinicians, and drug developers to present on their work, to meet one and other and to network, fostering future collaborations and generating new and exciting ideas to further research into FOP.
## UMass Gene Therapy Update
We were excited to hear that Gene Therapy work that IFOPA, FOP Friends and others helped establish was able to reach an important milestone. The milestone was the demonstration by Jae-Hyuck Shim, PhD and Guangping Gao, PhD.
Jae, Dr Goa, and their team showed a proof-of-concept, in a humanized mouse model of FOP, that they could deliver using a bone specific Adeno-associated virus (AAV) vector, a bone-specific carrier, to deliver therapeutic gene(s) to bone cells. Excitingly their work, whilst not yet ready to translate into patients, demonstrated that AAV gene therapy is a potent suppressor of unwanted traumatic and spontaneous extra-skeletal growth as occurs in FOP.
This research, along with other research info FOP also has far reaching implications for more common bone disease such as osteoporosis, fractures, and bone loss due to arthritis.
It is clear the research FOP Friends, the IFOPA, and others are funding into FOP is brining hope of not only potential treatment, but of a possible, cure to the FOP. But until our worldwide community has those things in their hands, we must continue to keep research moving forward, whilst also supporting our FOP community on the journey.
## How we raised our money
Voluntary income accounts for most of the money raised within our charity’s financial year. A small amount is attributed to investment income (interest on bank balances) and £0 revenue from fundraising events attributed to the continued impact of the Covid-19pandemic.
This year there was decrease of 9% in voluntary income to £219,354 overall which masks a notable drop in unrestricted funding, most from community fundraising efforts of 59% to a total of £71,804 from £177,150 the previous year.
We saw a small increase in revenue generated from sales to £2,009 from £1,728 the previous
year. This is another small increase on the previous year.
From a total £231,413 incoming resources, £156,076 (67%) were restricted. The remaining £75,337 (33%) being unrestricted.
This charity year, the distribution of restricted and unrestricted has reversed with significantly more income landing the restricted category. This is largely due to restricted income for the 2022
Conference and Family Gathering and a reduction in funding from our FOP community and supporters.
## 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 96% of all fundraised money directly supports our charity objects of; family support; awareness; and funding research. [Note: Voluntary Donations VS Fundraising Costs]
FOP Friends donated a total of £50,545 to FOP research this charity year. A figure lower than that of previous years due to funding provided in 2021 covering a two-year period. We expect this to rise in the next charity year back to typical levels.
The main beneficiary of FOP Friends is the FOP Research team at the University of Oxford. Led by Professor Alex Bullock, the team is one of a small number of teams in the world, conducting research into FOP. This year’s funding allowed the team to grow back to three dedicated staff and two support staff.
Fundraising costs of £2,504 is attributed to the provision of fundraising materials and merchandise to support various fundraising events.
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 £537 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 of Covid and a 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.
## 10 Years as a Registered Charity
This year we reflected on our journey as a patient organisation. We never cease to be amazing by how far we have come yet recognise there is so much more to be done. We marked the occasion – a little bit early – at our Conference in May. We shared memories of the past few years and celebrated the friendships and positives (many unexpectedly) that had borne out of charity. We had cakes and balloons for all our attendees. It was particularly poignant to be able to share the occasion with Janet Plumb, Oliver’s past childminder who has supported him, the charity, and our cause from the very beginning after reading a newspaper article about a little boy with a rare condition. She made him a cushion to provide him comfort - which he still sleeps with today - and the rest, as they say, is history.
## 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.
## FOP Friends Conference and Family Gathering
After much deliberation and careful consideration, we made the decision to hold our FOP Friends Conference and Family Gathering in-person at the Manchester Airport Radisson Blu Hotel. We took expert guidance and ensured that we were following all the current protocols. Some international speakers were not able to attend due to travel restrictions imposed on them by their establishment. However, many did attend and were thankful to be able to get together after such a long time apart. The event was a resounding success.
## 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.
## #FunFeet4FOP and Global FOP Awareness
We continued to support the Global FOP Awareness campaign of the IFOPA raising much needed awareness of FOP beyond the immediate FOP community. And we continue to run our #FunFeet4FOP awareness campaign as part of FOP Awareness Day. A campaign we launched in April of 2016.
## 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.
## Attendance at Conferences and meetings
In March 2022, Chris attended his last IFOPA Board meeting. However, due to lingering Covid travel restrictions and real concerns for the wellbeing of the FOP community, the decision was taken to hold the meeting virtually again. Hopefully, this will be the last year as we all find a way to live with the challenges Covid created.
Helen takes part in an FOP Seminar for GOSH. Presentations are given to paediatric endocrinologists. There are presentations and case studies from Professor Keen, Dr Gehan Abou-Ameria, and Dr Chesover. Helen speaks about their journey to diagnosis for Oliver and answers questions as a panellist.
Chris attends a NICE scoping meeting in preparation for the approval process in the UK for Ipsen’s potential treatment palovarotene.
We attend several meetings throughout the year with interested parties and advocacy support groups to help us to prepare for the NICE process. We work with Realise Advocacy to survey the UK’s FOP community to establish their needs and challenges, and the potential benefits of having access to a treatment.
Oliver, Chris, and Luciana give a presentation to staff, both in person and via a link, to the staff of Ipsen pharmaceuticals. Oliver talked about his life and living with FOP. Chris and Luciana also shared their experiences of their journeys with FOP, how they are learning to live with the uncertainty of FOP, and why we need desperately need a treatment and eventually a cure for FOP.
Chris flew to Dallas, Texas to attend the first in-person IFOPA Drug Development Forum since Covid. He met in-person with old friends and long-time FOP researchers, and for the first time the FOP Gene Therapy team, a team FOP Friends supports via the IFOPA’s “In pursuit of a cure” campaign.
He enjoyed hearing about all the latest FOP research, challenges and successes, and future of FOP drug development. As usual he was persuaded into talking, to being interviewed, to being filmed, but still managed a moment of rest at the Dallas Fort Worth Stockyards cattle drive.
After a chance meeting at a science museum, Helen made a connection with a professor from the University of Salford’s engineering department. After explaining the challenges that those living with FOP face with simple everyday tasks
We support the IFOPA’s virtual Family Gathering in Septemeber. We host s virtual FOP Friends’ room and share our resruoces. We support the event by acting as facilitors in breakout sessions, ahnd hosting virtual bingo.
A fabulous day at the University of Oxford, meeting the new FOP research team. There was a tour of the FOP research lab where families could see where critical research is being carried out as they search for answers and a treatment for FOP. We were also treated to a presentation by Emeritus Professor Jim Triffitt who was instrumental in the discovery of the FOP gene many years ago.
Chris flies to Paris, France, to take part in Ipsen’s Global Patientcentricity.
We host a webinar for our families, friends and supporters to update them about the StopFOP trial.
## Impact and value
FOP Friends continues to benefit from the enthusiastic and generous support from some of our families. The funding the money FOP Friends receives allows the search for a treatment and a cure for FOP to continue supporting research endeavours both in the UK and beyond. We also continue to increase and improve the way we directly improve the lives of those living with FOP as we wait for the treatment, we all so desperately want and need.
We continue to grow as a charity, and we continue to be a source of information and advice to many. Our reputation now precedes us, and in the rare disease world, we are becoming increasingly known and talked about. We continue to seek out funding from grants, trusts, and companies to allow us to continue our work and fulfil larger projects. However, we continue to be grateful to the tireless
efforts of our supports who seem to come up with ever-increasingly creative ways to raise much needed funds to support the research. As a small charity, we truly appreciate every donation, and each-and-every event.
As much as we would like to, we can’t thank every supporter, some remain anonymous, but we hope they know how much we, and the FOP community, appreciate them.
## Supporting families
We continue to support our families in many ways. We have worked alongside educational professionals to advise on suitability of the school environment for one of our families. We have also supported families with the completion of their EHCP plan. We continue to share updates with the community about any updates to the Covid and advice guidance for patients with FOP, as advised by the ICC for FOP.
We have been updating the website with information and signposts to other organisations which can help to support our families with the challenges FOP brings. We have sourced charities which provide wishes and special treats for adults. We have also arranged to have a book sent out to all our children and young people as part of The Alma Triffitt award.
We have advised OTs on specialist equipment for patients and liaised with families and their GPs to ensure prompt access to medical advice.
Perhaps most importantly, we provide a listening ear to patients and families alike. We are available when our families 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.
## Cycling for a cure
Alanna and her friends organised a sponsored walk on in Bridgwater to raise awareness of FOP. Friends and family went to Victoria Park and walked, scooted, rolled, and cycled. Alanna completed 10 laps (approximately 3 miles!) on her trike. She and her friends surpassed their target of £1000.
## Travelling far to fundraise, the Boston Marathon
Becky has been a supporter of FOP Friends for many years. Her latest challenge to raise money and awareness for FOP, was the Boston Marathon. After taking part in shorter runs as training, Becky was pleased to be offered a place in the prestigious race. Her hard work and dedication paid off as she ran a new personal best of new personal best of 3:36:10 and raised over £1000 for FOP Friends.
## The Windlesham Picnic
FOP Friends was chosen for the first time as one of the charities to benefit from the Windlesham Picnic fundraising event. It was in honour of Isla, who is a local resident in the village. The picnic is an adult-only event and has been running for 25 years. Many local businesses donate raffle prizes to help raise money during the event. An incredible £2000 was donated to FOP Friends from this event!
## Team Lenny’s Crowdfunder
After his diagnosis, Lenny’s family set up a Crowdfunder to help contribute towards the research into a treatment and a cure. Friends held fundraisers and rallied around to help. To date they have raised over £7,000 with more events to come.
## Simon Sings for Alanna
Following on from last year’s busking success, Alanna’s mum Steph arranged a summer fete with Simon as the headline act. The whole community came together for a beautiful Somerset summer’s day, to enjoy music, cakes, raffles, and games. It really was fun for all the family. The event raised £500.
## Superhero Triathlon
Isla and her friends took part in the Superhero Tri and raised a whopping £1100 for FOP Friends! It is an all-ability event, with Isla completing her part of the team event on her trike. In Isla’s words, she had “the best day ever”.
## Paddle the Thames
The ‘Paddle the Thames’ route beings in Lechlade and ends in Teddington – putting the challenge at an impressive 137 miles. With incredible effort they completed the challenge in just 5 days and raised an unbelievable £4100 in the process.
## Great North Run
FOP Friends had 15 runners for the 2022 race. Oliver and Chris attended the race and waited at the finish line to greet and cheer on the runners, as well as provide them with a well-earned refreshment. An incredible £10, 599.
## Raid Train Fundraiser
Engraver Gamer arranged the first ever Raid Train fundraising event on Twitch on behalf of FOP Friends. Several gamers, crafters and musicians took part in this Raid Train event that lasted for 48 hours. It was a great way to raise awareness of FOP on a global level and collated donations that totalled to £2350. Future events are already being planned.
## Little Lexi’s Big Party
The party was held at the Shendish Manor Hotel and Golf Course, Hemel Hempstead. It was a fabulous event with DJ, dancing, an auction and more. All funds raised went towards supporting the research into finding a treatment and a cure for Lexi and her friends. The event raised a staggering £13,000 for FOP research!
## Leo and Eddie complete the Local Landmarks around Sale
Oliver’s brother Leo (13), and his cousin Edison (12) took part in the Local Landmarks around Sale. With the charity FOP Friends being a big part of both of their lives from a young age, they were very aware of the impact of living with a rare condition such as FOP and how it affects people’s daily lives. The boys were thrilled with their efforts and their time. Thanks to their generous friends and family, the boys raised an amazing £1000!
## Future plans
Just as we were coming out of Covid times and settling into a new-normal we entered a world of international conflict and strife with the invasion of Ukraine by Russia and all that followed, including ratcheting inflation, astronomical energy costs, and seemingly never-ending price increases, all leading into a worsening cost-ofliving crisis through 2022, and no doubt beyond.
As one might expect this has had an impact on fundraising activities for us, and all many other charities. As such we look carefully to the future and the funding needs of our FOP research teams. We will navigate these difficult times as best as we can and plan accordingly. However, we remain positive and are in a reasonable position as a charity to ride out the storm, at least for long enough for the world to settle into another newnormal.
On a more positive note, we have already brought our community back together, in-person, for the first time since Covid, which was a resounding success, and we are already looking forward to 2024 when we will hold the next conference and family gathering. And whilst we are able, we will continue to provide much needed funding and support to FOP research and our FOP families.
We hope that our community and supporters will continue to fundraise to support us through these tough times, and still, we look positively to the future, continuing to work on projects that will help and support our FOP communities. Projects that include a major update to our school handbook “Supporting a Child with FOP: a practical guide to their learning experience”, a new resource for children with FOP and their siblings, our “FOP and Me” journal, both of which continue to suffer from delays post-Covid.
We continue to work with the engineering and design department of the University of Salford who are building custom tools for patients with FOP in the UK. And we look to changing the day-to-day lives of our FOP community with a drive to improve dental care for FOP patients, and to provide mental health support for our community in the future.
As we look towards the next charity year, we look again at our longer-term strategy for FOP Friends. Aiming to create a more robust charity that can survive beyond the founding trustees and their commitment to the day-to-day operation and success.
We must continue to raise awareness of FOP and encourage fundraising to support FOP Friends and its activities along with looking towards grant and trust funding for future projects that will benefit the FOP community. And, of course, alongside these activities, we will continue to support our FOP community to the best of our abilities.
## Ambition and long-term strategies
## Charity objectives
- To grow the charity to make the annual fundraising target of £125,000 more easily achievable and to be in a strong position to increase this target soon.
- To increase public awareness and expand the fundraising activities beyond friends and family.
- To reduce misdiagnosis and to help ensure there are more UK-based FOP experts and centres where treatment and possibly future clinical trials can take place.
- To continue our involvement with the FOP community worldwide and help advance FOP research and awareness internationally.
- To increase support given to FOP Families.
- To maximise grant income through clearly defined projects.
- To ensure regular communications are sent to the community and supporters. To keep everyone informed of work the charity undertakes, progress with research and to thank those who fundraise.
- To become a sustainable charity not reliant on the efforts of a small number of committed volunteers.
## Preventing misdiagnosis
- Increase awareness of FOP with both health professionals and the public to reduce misdiagnosis and therefore the fallout from investigations that often trigger devastating episodes of FOP bone growth.
## Fundraising
- To continue to grow fundraising efforts, helping, and encouraging more FOP families to become involved.
- Through increased public awareness to expand fundraising activities beyond friends and family to become a charity of choice for the public to support.
- To sustain and maximise trusts and grant funding to continue the financial support for research.
- To secure and sustain grant funding to enable the charity to support employees on a long-term basis.
- To develop a Fundraising Pack to help those interested in fundraising to support the charity.
- To secure funding to cover core costs and reduce attendee costs for future UK FOP conferences.
- To actively seek corporate sponsorship as “charity of the year”.
- To create alternative fundraising campaigns to diversify income streams.
- To seek high-profile patrons to both, increase awareness and actively encourage and support fundraising.
## Family support
- To continue to provide support and advice to existing and recently diagnosed FOP families.
- To organise and deliver additional and regular family gatherings across the UK to support and promote the community and provide respite for families.
- To provide best advice and information to families, schools, clinicians, and others in understanding FOP and the challenges it poses.
## Medical support
- To reach out to health professionals and professional bodies to create interest and awareness of FOP to help prevent misdiagnosis but also to increase the available support for those with FOP.
- To help establish UK specialist centres for the care and treatment of FOP patients.
- To strengthen the reliability of our information sources by acquiring the NHS Information Standard.
## 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 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.
## 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:
- Select suitable accounting policies and then apply them consistently.
- Observe the methods and principles in the Charities SORP.
- Make judgements and estimates that are reasonable and prudent.
- State whether applicable accounting standards have been followed, subject to any material departures disclosed and explained in the financial statements.
- Prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in business.
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
## Financial review
## Summary
Gross income totalled £231,413 with £434,984 being carried forward to next charity year. Of the amount carried forward, £125,000 is designated to research; £15,000 to operating reserves; and £196,609 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 £231,413 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 £102,529 (was £20,361) in grants. An 403% increase on the previous charity year. This is attributed largely to funding secured towards the 2022 FOP Conference and Family Gathering.
## Charitable expenditure
Through the charity year, £50,535 was spent on funding FOP research. This was entirely directed towards the University of Oxford FOP Research team.
Operating costs of £48,141 include costs associated with fundraising of £3,272 (t-shirts, event places, and support of fundraisers), operation costs of £41,031, £537 in governance costs, and £2,542 costs associated with projects.
Governance costs of £537 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 9% from £241,407 to a total of £219,354.
## 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 £157,626 in funding received in this reporting year has been restricted towards 2022 FOP Conference and Family Gathering, and several projects including ‘FOP Video’ update, ‘FOP & Me’ journal for children, “Supporting a Child with FOP: a practical guide to their learning experience” book, and the Alma Triffitt book award amongst other items.
## Investments
Presently FOP Friends has no investments.
## 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.
## 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:
- examine the accounts (under section 145 of the Act)
- to follow the procedures laid down in the General Directions given by the Charity Commission (under section 145(5)(b) of the Act)
- to state whether particular matters have come to my attention
## 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:
- a. to keep accounting records in accordance with section 130 of the Act; and
- b. to prepare accounts which accord with the accounting records and comply with the accounting requirements of the Act; have not been met; or
2. 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
Consolidated statement of financial activities
|||**-**
**Notes**
**Restricted**
**Unrestricted**
**2023**
**2022**|
|---|---|---|
|||**Incoming resources**|
|**From generated funds**|||
|Voluntary income
2
£147,550
£71,804
£219,354
£241,407|||
|Investment income
£-
£1,524
£ 1,524
£30|||
|**Other incoming resources**
3
£10,076
£459
£10,535
£ 3,815|||
|Total incoming resources
£157,626
£73,787
£231,413
£245,252|||
||||
||**Resources expended**||
|**Costs of generating funds**
4
£2,530
£4,043
£ 6,573
£27,013|||
|**Charitable activities**|||
|Research
5
£-
£50,535
£50,535
£130,000|||
|Events
6
£30,483
£-
£30,483
£ 2,419|||
|Awareness
£-
£2,548
£ 2,548
£518|||
|Projects
£-
£9,650
£ 9,650
£-|||
|**Operational Costs**
7
£35,666
£5,365
£41,031
£-|||
|**Governance costs**
8
£-
£537
£537
£ 2,798|||
|Total resources expended
£68,679
£72,679
£141,357
£162,748|||
||||
|**Net incoming/(outgoing)**
**resources**
£88,947
£1,109
£90,056
£82,504|||
||||
|**Reconciliation of funds**|||
|Total funds brought
forward
£107,662
£237,230
£344,892
£262,388|||
|**Total funds carried forward**
£196,609
£238,339
£434,948
£344,892|||
## Balance sheet
|**-**|**Notes**||**2023**||**2022**|
|---|---|---|---|---|---|
|**Fixed assets**|9||£1,081||£1,296|
|||||||
|**Current assets**||||||
|Cash at bank||£ 436,823||£ 348,009||
|Debtors|10|£600||||
|||£ 437,423||£ 348,009||
|||||||
|**Creditors: amounts falling**
**due within oneyear**|11|(£3,557)||(£4,413)||
|||||||
|**Net current assets**|||£ 433,867||£ 343,596|
|||||||
|**Net assets**|||£ 434,948||£ 344,892|
|||||||
|**Funds**||||||
|Restricted|12||£ 196,609||£ 107,662|
|Designated|13||£ 140,000||£ 140,000|
|Unrestricted|||£98,339||£97,230|
||||£ 434,948||£ 344,892|
Approved by the trustees on 1[st] December 2023 and signed on their behalf by
Alison Acosta Bedford.
Founding Trustee
The notes on pages 34 to 36 form an integral part of these financial statements
## 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.
## **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_
||**2023**|
**2022**|
|---|---|---|
|Donations|£116,825|
£221,046|
|Grants|£102,529|
£ 20,361|
||£219,354|
£241,407|
## _3. Other incoming resources_
||**2023**|
**2022**|
|---|---|---|
|Conference fees|£8,526|
£1,728|
|Sales|£2,009|
£2,087|
||£ 10,535|
£3,815|
## _4. Cost of generating funds_
||**2023**|
**2022**|
|---|---|---|
|Salaries|£-|
£ 20,182|
|Fundraising costs|£3,272|
£2,504|
|Project costs|£2,542|
£2,702|
|Operational costs|£760|
£1,625|
||£6,573|
£ 27,013|
## _5. Research_
||||**2023**|
**2022**||
|---|---|---|---|---|---|
|UK|research|
£|50,535|
£130,000||
|International|research||£-|
£-||
|||£|50,535|
£130,000||
## _6. Events_
|||**2023**|
**2022**|
|---|---|---|---|
|Conference meeting costs|£|30,483|
£2,419|
||£|30,483|
£2,419|
## _7. Operational_
||**2023**|
**2022**||
|---|---|---|---|
|Salaries|£ 35,666|
£-||
|General expenses|£2,480|
£-||
|Repairs and maintenance|£112|
£-||
|Subscriptions|£2,150|
£-||
|Bank charges|£149|
£-||
|Depreciation|£474|
£-||
||£ 41,031|
£-||
## _8. Governance_
||**2023**|
**20222**|
|---|---|---|
|Accountancy charges|£115|
£110|
|Insurance|£422|
£420|
|Subscriptions|£-|
£1,800|
|Bank charges|£-|
£19|
|Depreciation|£-|
£203|
|General expenses|£-|
£246|
||£537|
£2,798|
## _9. Fixed assets_
||**Office equipment**|
|---|---|
|**Cost**||
|At 2nd March 2021|£2,860|
|Additions|£259|
|Disposals|£ -|
|As at 1st March 2022|£3,119|
|**Depreciation**||
|At 2nd March 2021|£1,564|
|On disposals|£ -|
|Charge for year|£474|
|As at 1st March 2022|£2,038|
|**Net book value**||
|As at 1st March 2022|£1,081|
|At 1st March 2021|£1,296|
## _10. Debtors_
||**2023**|
**2022**|
|---|---|---|
|Accounts receivable|
£600|
£ -|
||£600|
£ -|
## _11. Creditors_
|||**2023**|
**20222**|
|---|---|---|---|
|**Amounts falling**|**due within one year:**|||
||Accounts payable|£3,480|
£4,251|
||PAYE and NI|£568|
£944|
||VAT|(£950)|
(£892)|
||Accrued expenses|£225|
£110|
||Other creditors|£233|
£ -|
|||£3,557|
£4,413|
## _12. Restricted funds_
||**Balance b. fwd**|**Incoming resources**|**Resources expended**|**Balance c. fwd**|
|---|---|---|---|---|
|Conference fund|£22,048|£111,055|(£30,483)|£102,620|
|Family getaway|£7,256|£ -|£ -|£7,256|
|Operational|£ -|£46,571|(£38,196)|£8,375|
|Be Safe at School
Handbook fund|£35,170|£ -|£ -|£35,170|
|Charity leaflet|£246|£ -|£ -|£246|
|FOP & Me|£22,741|£ -|£ -|£22,741|
|FOP Video|£20,000|£ -|£ -|£20,000|
|Alma Triffit Book|£201|£ -|£ -|£201|
|Award|||||
||£ 107,662|£157,626|(£68,679)|£196,609|
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.
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.
## Our history (to 1[st] March 2023)
## 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
## 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
## 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.
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.
## 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.
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.
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!
## 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.
## 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.
## 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.
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.
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.
## 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
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.
## 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.
## 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!
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.
## 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.
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 the 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.
## 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.
## 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 TuesdayTakeover 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.
## 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.
## Thank you (March 2022 – March 2023)
We would like to acknowledge our ever-growing supporters. A list that we hope will grow year on year.
## Trusts / Grants
Big Lottery Fund
## Corporate Supporters
Regeneron Pharmaceuticals Ipsen Biopharmaceuticals Incyte Corporation BioCryst Pharmaceuticals Skillsarena
## Donors of time and resources
Stephen Fry: Narrated FOP Animation & 2022 FOP Conference welcome. Skillsarena: Director’s time Foliozine: FOP Friends Logo
Community / Clubs and Associations
Manchester Round Table Royal Northumberland Yacht Club
## 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.