the foundation THEFREYAFOUNDATION.CO.UK ra w o The Freya Foundation Trustee Report and Accounts For the year ended 18 May 2024 Trustee's Annual Report & Accounts For the year ending 18 May 2024 Contents Page Charity details Charity Manager's foreword Trustee's Annual Report Independent examiner's report to the Trustees of The Freya Foundation Receipts & Payments accounts for the year ending 18 May 2024 The Freya Foundation Registered Chariiy Number.. 1157761 www.thefreyBlouftdation.£o.uk Trustee's Annual Report & Accounts For the yearending 18 May 2024 Charity details Charity Number 1157761 Operational Address 12 Lewis Road Bedminster Down Bristol BS13 7JB Trustees Kelly Gilbert Steven Watson David Hayward Michelle Perry Richard Nicholls Lisa Saundry Charity Manager & Founder Kelly Gilbert Bankers Lloyds Bank PLC 25 Gresham Street London EC2V 7HN The Freya Foundatlon Registered Charity Number: 1157761 www.thefreyafoundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2024 Charity Manager's foreword The Freya Foundation was formed in 2014 by myself and my husband, Dave Gilbert, after our daughter Freya was diagnosed with Pyruvate Dehydrogenase deficiency IPDHI. This means that those born with this disorder are unable to convert some of their food into energy. Unfortunately, those born with this condition have severe medical issues often resulting in death in childhood. There is no known cure currently. We had little knowledge of PDH, what it meant and how to look after Freya. We were offered very little support, and we felt completely lost and scared. We wondered how many other parents with children who were diagnosed with PDH managed. After much research and communications, we quickly realised there was no support and little reliable information, so we decided to create a charity with the main aims being: Raise awareness of the condition throughout the UK Build a support network of families Support research into the condition th This is our 9 year as a charity, and we now support 27 families across the UK. Each year brings new families, and we have been working closely with hospitals across the U.K not only with the research project but also to continue providing support and guidance throughout their diagnosis. We now have several strands of activity as we continue to grow and support our many families: . l. Family support group 2. Respite support 3. Counselling support 4. Family meet up 5. Research 6. Bereavement and sibling support In August 2023 we held our annual fundraiser- Pullin, for Freya. We had decided to get together a team of friends, family and Freya family members to pull a Boeing 737 a distance of 50 metres. It was a tremendous day and what IS more it was successful, not only did the team succeed we also raised £2,000. An exciting development this year was the inception of the first ever gene therapy project with a team from UCL (University College Londonl. The aim is to develop a model gene therapy for PDH Deficiency. The UCL team are currently undertaking a pre-clinical proof of concept study to determine whether this gene therapy could be used in clinical trials. This project is the first of its kind in the UK and Europe. We are excited to see how the project will progress, and we will report on it regularly. We have also affiliated with MetabERN (the European Reference Network for Hereditary Metabolic Disorders} and as a result of our collaboration we have produced the first ever patient Journey for PDH Deficiency. When a patient is diagnosed with PDH Deficiency they will receive the same patient journey information whether they are in the UK or Europe. This includes information on symptoms, diagnosis, treatment, monitoring and adult life. The patient journey is currently published in the following languages- English, Portuguese, Norwegian, Polish, Spanish, Swedish and Georgian and will soon be available in French, Dutch, German, Italian, and Estonian. The goal is to get them translated into many more language5 over the coming month5. We continue to work extremely hard behind the scenes, and this patient journey is the first steps towards getting standardised patient guidelines written, which as you can imagine takes a huge amount of time and legal red tape. The Freya Foundation Registered Charity Number.. 1157761 www.thefreyafoundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2024 Charity Managerfs foreword continued th 2025 is the 10 year of the charity. To mark this special anniversary, we shall be holding a party in September where I will cross the finish line after completing a full marathon distance which completes my challenge of the distance of 10 marathons in 10 months. which I started in January 2024. Finally, I would like to express my thanks on behalf of the trustees for all the support received on our journey so far and look forward to your continued support as we continue to grow and support more families in the future. Kelly Gilbert Founder The Freya Foundation Registered Charity Number: 1157761 www.thefreyafoundaiion.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2024 Trustee's Annual Report Objectives and Activities The primary objective of the charity is to promote physical and mental health, and provide relief for children suffering from Pyruvate Dehydrogenase Deficiency (PDHI and their immediate families by: o Providing support families through funding and advice o Research into the cure and management of PDH. o Raising public awareness of PDH and educating the public about the condition. The charity also works and networks with medical professionals primarily from Bristol Children's Hospital and Great Ormond Street Hospital, to streamline and improve diagnosis, treatment and research efforts into PDH, and provide a support network for families living with PDH and bereaved families. In the year for which this report covers the main activities undertaken by the cha rity are as follows: Large family meet ups to share experiences, have chance to discuss and learn of new developments from the medical experts. o Offer respite seNices as extra support to families. o Increased counseS1ing services. Online support. o Family support group. Fundra ising activities including a plane pull. Achievements and Performance We continue to support and fund a research project which has made a major breakthrough in its research into PDH. This year has seen us become affiliated with MetabERN, the European Reference Network for Hereditary Metabolic Disorders, as a supporting patient partner. With this affiliation, we will be working closely with a wide range of medical professionals who help deliver the best care for those affected by rare metabolic disorders, specifically for us, PDH Deficiency. This is a massive achievement a nd milestone for us as the result of this affiliation will mean that there will be clear patient guidelines distributed throughout hospitals ensuring that PDH Deficiency is better understood, and treatments are better recognised. We held a very successful fundraising event called "Pulling for Freya" this was thought up by our treasurer, seeing 21 'plane pullers, travelling to Dorset to pull a Boeing737. This event was well supported by fam ilies of the Freya Foundation and friends that travelled from many area5 of the country. Hunters Estate Agents in Bishopsworth have given us amazing support over the past year and in May 2023 they presented us with a cheque in excess of £8,000, which they had raised over the previous year. They have also continued to support us during 2024, we would like to say a massive 'Thank you, to them. There have been many individual fund-raising activities and events. In May 2023 Emma and Theo ran the "Great Manchester Run" Rose Winter completed the "ICKI mile London Bike Ride" and Hannah Murphey completed the London Marathon in April 2024. We would like to say a huge thank you to everyone who has taken on fundraising challengesto support us this year. During the year we were also awarded a grant of £9,100 from the National Lottery Community Fund towards administrative support within the charity, we are very grateful to them for supporting us. The Freya Foundation Registered Charity Number.. 1157761 www.thefreyafoundation.co.uk Trustee's Annu31 Report & Accounts For the year ending 18 May 2024 th January '24 saw the start of Kellys challenge to celebrate the 10 Year of The Freya Foundation, by completing the distance of 10 marathons in 10 months. Finishing on 21 September'24 with a full marathon. Trustee Annual Report Contlnued There was a Clay Pigeon shoot SUPPOrting Lila and family in February, which raised almost £2.000. A Just Giving page was set up when Lila was newly diagnosed, sharing the proceeds between The Freya Foundation and the hospice that support them. We would like to thank all our amazing families for the work they all do to support the Foundation. You are all amazing. During November'23 we had another successful family meet up, at Chessington World of Adventure, with guest speakers from UCL (University College London) who gave details to families of our groundbreaking research project into PDH Deficiency Future- in the year ahead we will be: l. Having our family meet up at Ribby Hall. th 2. Celebrate The Freya Foundations 10 year. We shall be doing Kelly's challenge with a celebration event on completion of the final marathon in September, 3. Continue to offer Counselling and Grants to families struggling in the current climate. 4. Offer Freya Foundation merchandise at the Charity events. Financial Review All reseNes left over at the end of the financial year are carried over into the following year entirely for the use of the charity in the fulfilment of its objectives as set out above. Over the p35t year the charity has raised £56.7k12023- 30.5kl from donations from Hunters and individuals from sponsored events and activities. In each year our expenditure has enabled the formation of an infortnal sUPPOrt network of families giving the opportunity for them to meet and support one another as well as with experts to ask questions and gain information on the latest treatments and research from medical experts and dieticians. In this year the funding of the research project has also enabled a major break though on the road towards the management and possible cure for PDH. Signed.. Name: Ic Position- J4kn7 S/ The Freya Foundatio Registered Charity Nymber.. 1157761 www.thefreyafoundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2024 Independent examiner's report to the Trustees of The Freya Foundation I report to the Trustees on my examination of the accounts of The Freya Foundation (the Charity). As set out on page 8 for the period ended 18 May 2024. Responsibilities and basis of report A5 the Trustees of the Charity you are responsible for the preparation of the accounts in accordance with the requirements of the Charities Act 20111'the Act'}. I report in respect of my examination of the Charity's accounts carried out under section 145 of the 2011 Act and in carrying out my examination I have followed all the applicable Directions given by the Charity Commission under section 145{5}{bl of the Act. Independent examIne￿S statement I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination giving me cause to believe that in any material respect: accounting records were not kept in respect of the Charity as required by section 130 of the Act; or 2. the accounts do not accord with those records. I have no concerns and have come across no other matters in connection with the examination to which attention should be drawn in this report in order to enable a proper understanding of the accounts to be reached. Signed: Name: Address". Date: IZ k&S The Frey3 Foundation Reglstered Charity Number.. 1157761 www.thefreyafoundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2024 Receipt5 and payments accounts for the year ending 18 May 2024 2024 Unrestricted Funds 2024 Restricted Funds 2024 Total Funds 2023 Total Funds Receipts Donations & Grants Fundraising event5 Fundraiser Hunters Other 20,599 9,100 29,699 5,080 24,400 1,586 1,042 24,400 1,586 1,042 17,900 5,400 2,204 Total Receipts 47,627 9,100 56,727 30,584 Payments Cost of fundraising and events Research Grants Family Gatherings/Support Wages/Salaries Printing, Postage, Stationery Telephone Sundry Office Running Costs Merchandise Total Payments 5,431 13,000 17,171 5,431 13,000 17,171 5,439 1,522 579 147 4,800 6,046 54,135 8,525 19,046 3,212 1,435 556 816 8,600 5,439 1,522 579 147 4,800 6,046 48,696 5,439 42,190 Net of receipts/{payments) (1,069) 3,661 2,592 -11,606 Cash Funds B/fwd from 2023 35,289 35,289 Cash Funds at year-end 34,220 3,661 37,881 The Freya Foundation Registered Charity Number.. 1157761 www.¢hefreyafoundatTon.co.uk