10 foundation YEARS EST. 2014 The Freya Foundation Trustee Report and Accounts For the year ended 18 May 2025 Trustee's Annual Report & Accounts For the year ending 18 May 2025 Contents Page Charity details Charity Managerfs 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 2025 The Freya Foundation Registered Charity Numbei.. 1157764 'ww.thefrÈyafoundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2025 Charity detalls Charity Number 1157764 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 2S Gresham Street London EC2V 7HN Thè Freya Found3tion ReB15tered Charity Number. 1157764 www.thefrey?fovndÈtion.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2025 Charity Managerfs foreword The Freya Foundation was formed in 2014 by myself and my husband, Dave Gilbert, after our daughter Freya wa5 diagnosed with Pyruvate Dehydrogenase def iciency IPDH Deficiency). 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 Deficiency, 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 Deficiency managed. After much research and communications, we fast realised there w35 no support and little reliable information, so we decided to create a charity with the main aims being; Raise awarenes5 of the condition throughout the UK Build a support network of families Support research into the condition th This is our 10 year as a charity, and we now support 33 families across the UK. Each year brings new families, a nd we have been working closely with hospitals across the U. K not only with the research project but also continue providing support and guidance throughout their diagnosis. We continue to have several strands of activity as we continue to grow and Support our many families.. - l. Family support group 2. Coun5elling support 3. Family meet up 4. Research 5. Bereavement and sibling support This year was a massive achievement for us as we celebrated our 10-year anniversary as a charity, something l am massively proud of. As my challenge this year I decided to run the distance of 10 marathons in 10 months lishl, one for each of the years we've been running. I was very fortunate in having many Freya supporters join me on this crazy mission. It was a huge success although very tiring. The last run was a marathon distance, and I was joined 10 others who braved the elements to complete the 26.2 miles. Due to various injuries, we had to slow the pace a little, but we were determ ined to complete it event if we did get rather wet. The marathon finished with us arriving at our local community centre where we were met by nearly 150 people and rapturous applause. Thi5 was a great evening of celebration and acknowledgement of our achievements over the last 10 years, we were even joined by many of the Freya Families we sUPPOrt. We had a wonderful time and managed to raise just over £1,200 on the night and more in sponsorship. We continue to work tirelessly and dedicate our time in improving information available to families with our latest project being the first patient information leaflet which will be released later on this year. This leaflet is the first of its kind and will be available to anyone affected by PDH Def iciency this is due to our important collaboration with Great Ormand Street Hospital (GOSH The Freya Foundation Reg15tered Charity N,Jmber' IIS7764 www.thefre¥'afoun03110.",.co.uk Trustee's Annual Report & Account5 For the year ending 18 May 2025 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 5UPPOrt more families in the future. The Freya Foundation Registered Charity Number". 1157764 ww.thef". eya10￿ndHtiOn.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2025 Trustee's Annual Report Objertives 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 IPDHI and their immediate families by.. o Providing support families through funding and advice 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 charity are as follows: o Large family meet ups to share experiences, have chance to discuss and learn of new developments from the medical experts. Increased counselling services. Online support. o Family support group. o Fundraising activities inclLJdin8 our 10-year celebration and Marathon. Achievements and Performance Since the announcement of the breakthrough last year in the research on PDH Deficiency progress is continuing to be made. Patient journey docurnents were produced in association with The Freya Foundation and publlshed via Great Ormond Street Hospital IGOSHI this year. The patient journey is an important step and one we are very proud of as it offers information for patients, fami lies and medical professionals once a diagnosis has been received, as well as signposting families to the Freya Foundation for further support. th In September of 2024 the Freya Foundation celebrated it5 10 birthday. Going into the 10 year Kelly, the charity Founder and Manager, set herself the task of running 10 marathons in 10 months which was completed, crossing the th finish line into a f undraiser and 10 birthday party for the charity. During the year we were awarded £19,435 from The National Lottery Community Fund to cover the costs of our familv meet up. Future- In the year ahead we will be: I, Holding our family meet up at Chessington World of Adventure in October 2025, where there will be presentations from the medical team at Great Ormond Street Hospital and Research progress update from the team at University College London. 2. Continue to offer support and counselling to those in need, as well as grants to families that are struEgling. 3. Continue to offer Freya Foundation merchandise at the Charity events. The Freya Foundation RÈgistered Charity Number.. 1 157?64 voww t￿re,,. Trustee's Annual Report & Accounts For the year ending 18 May 2025 Financial Review All reserves left over at the end of the f inancial year are carried over into the following year entirely for the use of the charity in the f ulfilment of its objectives as set OLSt above. Over the past year the charity has mostly ra ised funds through donations made by individuals from sponsored events and activities, leading to a surplus of £30,42312024.. £2,592), Our unrestricted reserwes have increased this year to £62,61212024: £34,219). These reserves are being built up in preparation for further funding of research in the next couple of years. In each year our expenditure has enabled the formation of an informal 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. Name: David Hayward Position: Trustee The Freya Foundatlon ReEiStered Charity Number.. 1157764 vw.thefrey3foundation.co.uk Trustee's Annual Report & Accounts For the year ending 18 May 2025 Independent examinerfs report to the Trustees of The Freya Foundation I report to the Trustees on my examination of the accounts of The Freya Foundation Ithe Charity). As set out on page 8 for the period ended 18 May 2025, Responsibilities and basis of report As the Trustees of the Charity you are responsible for the preparation of the accounts in accordance with the requirements of the Charitie5 Act 2011 {'the Act'l. 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 14515llbl of the Act. Independent examlnerfs 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 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 thi5 report in order to enable a proper understanding of the accounts to be reached, Signed.. Name.. Address.. 36 PÉio£Y Qoho, Date: Is rANuhQV Zo/b &1 fT¢JL 8Sq +bE The Freya Foundation Registered Charity Number.. 1157764 www.thefreyafoundation.10.uk Trustee's Annual Report & Accounts For the year ending 18 May 2025 Receipts and payments accounts for the year ending 18 May 2025 2025 Un restricted Funds 2025 Restricted Funds 2025 Total Funds 2024 Total Funds Receipts Donations & Grants Fundraising events Fundraiser Hunters Other 15,008 19,435 34,443 29, 699 36,700 510 3,973 36,700 sio 3,973 24,400 1,586 1,042 Total Recelpts 56,191 19,435 75,626 56,727 Payments Cost of fundraising and event5 Research Grants Family Gatherings/Support Wages/Salaries Printing, Postage, Stationery Telephone Sundry Office Running Costs Merchandise Total Payments 11,307 11,307 5,431 13,000 17,171 5,439 1,522 579 147 4,800 6,046 54,135 1,944 171 1,373 609 1,645 4,800 5,949 27,798 13,744 3,661 15,688 3,832 1,373 609 1,645 4,800 5,949 45,203 17,405 Net of receipts/lpaymentsl 28,393 2,030 30,423 Cash Funds B/fwd from 2024 34,219 3,661 37,880 Cash Funds at year-end 62,612 5,691 68,303 The Freya Foundation Re6istered Charity Number.. 1157764 wty.IhElrei gfoundation.¢o.uk