Action for XP Accounts
2024/25 Accounts for Action for XP SC045465
Receipts and Payments
| Receipts | 2024/2025 | 2023/2024 |
|---|---|---|
| Transfer from XPSG | ||
| Schools packs | ||
| Retail Little Ted Bears | £450.00 | |
| Little Ted Books | ||
| DSG/BMD books | ||
| Big Book of Yes | £46.79 | |
| Other Income/Donations | £639.82 | £930.13 |
| Sponsored Events | £5.00 | £10,882.33 |
| XP Connect/Comic | ||
| TT Events | ||
| Collected Gift Aid | £36.25 | £61.50 |
| Private donations | £1,900.00 | £1,970.00 |
| Grant received | £21,921.00 | £10,950.00 |
| Loan | ||
| TOTAL RECEIPTS | £24,952.07 | £24,840.75 |
| Payments | ||
| Charity event places | £61.20 | |
| Events | ||
| DSG/BMD | ||
| Travel and accommodation costs | £1,349.37 | £93.85 |
| Office costs | £4,072.55 | £3,044.89 |
| Just-giving & paypal charges | £325.97 | £338.14 |
| Insurance | ||
| Packaging and postage | £18.00 | £230.87 |
| Marketing | £158.78 | £122.34 |
| Miscellaneous Expenses | ||
| Donations | ||
| Rent | £1,412.01 | |
| Sub-contractor consultancy and support | £30.00 | £2,010.00 |
| Staff costs | ||
| Employee costs | £29,625.24 | £1,800.00 |
| Employers NI | £474.58 | £39.20 |
| Employer's Pension | £524.37 | £14.40 |
| Traning costs | £470.40 | |
| Costs of Projects | ||
| LT Book & Bear | £3,617.00 | |
| Patient Protection | £8,228.97 | £937.90 |
| Project Breakaway | £367.25 | |
| Travel Grants | £631.60 | £1,150.80 |
| XP Connect/Comic | £960.00 | |
| Mental Health Support | £2,960.00 | £1,425.00 |
Action for XP Accounts
| Little Ted & Friends animation | ||
|---|---|---|
| Little Ted goes to School packs | ||
| TOTAL PAYMENTS | £54,858.84 | £11,635.84 |
| SURPLUS/DEFICIT | -£29,906.77 | £13,204.91 |
| Action for XP Statement of Balances 2024/25 | ||
| 2024/2025 | 2023/2024 | |
| Opening Balance | £74,629.91 | £61,425.00 |
| Surplus/Deficit | -£29,906.77 | £13,204.91 |
| Closing Balance | £44,723.14 | £74,629.91 |
| Reserves | £32,476.00 | £27,475.00 |
| Remainder XP comic project grant | £2,990.00 | £3,950.00 |
| Remainder of international outreach grant | £0.00 | £2,000.00 |
| Donation for small adult Project Breakaway camp | £1,000.00 | £1,000.00 |
| BAD grant for mental health service | £5,565.00 | £8,525.00 |
| CiN grant for family event | £9,921.00 | |
| BAD grant for website update | £1,000.00 | |
| Operational reserve | £12,000.00 | £12,000.00 |
| Liability | £0.00 | £0.00 |
Action for XP Accounts
Charity Accountant’s Statement on Deficit
During the financial reporting period, the charity has recorded a deficit. This outcome is attributable to several interrelated factors:
Increased Staffing Costs: In line with our strategic decision to strengthen operational capacity and sustainability, the charity has moved to employing staff. While this investment enhances our ability to deliver services and improve governance, it has significantly increased our expenditure compared to prior years when operations were solely volunteer-led.
Fundraising Shortfall: Despite ongoing efforts, our fundraising activities have not generated the level of income anticipated. External factors, including a competitive funding environment and economic pressures on donors, have contributed to this shortfall. As a result, the additional costs associated with staffing have not yet been matched by corresponding increases in unrestricted income.
Delayed Grant Income: The charity has experienced delays in receiving grant payments from the NHS relating to annual awards made in 2023 and 2024. These funds, once received, will partially offset the deficit; however, the timing of payment has adversely impacted cash flow and contributed to the reported shortfall in this financial year.
Conclusion
The deficit reflects a transitional period in the charity’s development, as we build organisational capacity through staffing while awaiting the resolution of delayed grant income. Our Events and Fundraising Officer, with the support of the Trustees continues to further refine the charity's fundraising strategy in the hopes that 2025/26 may see improvements. In the meantime, prudent financial management and close monitoring of expenditure continue to be prioritised.
Approved by the Trustees and signed on their behalf by
Treasurer
Annual Impact Action for XP Support. Educate. Connect. Ist April 2024 - 31st March 2025 Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Support Educate Connect Action for xp (scio) Scottish Charitable Incorporated Organisation: SC045465 www.actionforxp.org support.actionforxp.org Registered address: Westfield, Cushnie, Alford, Aberdeenshire, A833 8LP @ActionforXP Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Structure, governance, management,miA . To provide practical and emotional support to individuals and families regardless of age and stage of life To reach underserved regions internationally by collaboration and knowledge sharing To further scientific understanding of XP through research and dissemination of research To provide education and awareness within the XP community and externally To promote inclusivity, diversity and equality operationally and across our activities Action for XP is recognised as a Scottish Registered SCIO and has a Board comprising seven Trustees. Our focus remains to support, educate and connect, in pursuit of improved lives for our beneficiaries. Trustee recruitment, and resignations There were four new trustees recruited to the board during our September recruitment drive and we welcomed Volunteers In addition to our board we are supported on a regular basis by the following volunteer: We had four resi farewell to nations from the board and we said Kwho was only able to serve for a short time due to changing work commitments). We would like to extend our thanks to all for their support over their time serving on the Action for XP board. resource disp8t¢h) Chair of the Board Trustee. XP patient, Dermatology Registra Treasurer Trustee, XP family Secretary Trustee, XP family Trustee Trustee, XP patient Trustee Trustee, XP family Trustee Trustee, XP family Trustee Trustee Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Letter mour I write this whilst sat looking out on the start of New Zealand's summer and the eye-watering high levels of UV this summertime here brings with it. l am thankful therefore for earlier diagnoses of Xeroderma Pigmentosum and expansion of our international community. I would also like to extend a personal thank you to all those people who were in a position to be able to make regular donations this year in support of the continued operations of Action for XP. It has been very challenging in the post-covid landscape to secure further funding which is in very high demand. , our two dedicated, pait-time team members have done a tremendous job from an operational perspective. I would like to remind our community therefore that any contribution. big or small goes an incredibly long way.. so please do get in touch if you would like to organise fundraising events or contributelvolunteer in any other way. It would be most welcome and well- received. . Chaft,qf'Tiustees k&tiortr.f rXP' Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
The year The following resources were dispatched directly to patients across the UK and internationally by our volunteer team (,129 17 UV protective face visors and legionnaires hats Little Ted bears and story book packs sent to new forever homes 23 Pairs of UV protective gloves Rolls of UV protective film Action for XF, provided the following resources to the NHS National XP Service. at the Rare Disease Centre, St Thomas, Hospital, London, to be disseminated to newly diagnosed children and adults attending the clinic. Patient packs; containing UV protective face visorslhats and gloves to be given to newly diagnosed adults and children in clinic We sent 5 specially designed UV meters to clinic to be distributed to families to help identify safe environments. Little Ted bears and story book packs for newly diagnosed children Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
"In 2024-2025 we shipped vital life- saving UV protective patient resources to 11 different countries across the globe." 11 Patients supported in10 difference countries, includinw. Egypt, Norway, Pakistan. Slovakia. Turkey. USA. Nepal. South Africa. India and Italy International support included complex shipping and customs coordination for international patients. Patient support £1,174 10 in customs fees covered for international families in need from low income countries of direct patient support via emails, telephone calls, 1-2-1 Zooms chats. Whats App and voice messages responded tol Including support for existing and newly diagnosed patients and school, nursery and work settings 32 32 fully-funded counselling sessions with RARE Minds providing mental health support for patients and caregivers Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Education and awareness During the year we attended the British Association ot Dermatology event. And our community featured in a number of awareness raising articles. BAD Conference overview https:Ilwww.actionforxp.orglnewslarchives107 -2024 My brother. my 8unghine by f•atur•d In RARE Revolution Siblings edltlo http8:Iladltlon8.rar•r•volutlonmagazln•.comlht mlSlreadorlproductlonld•fault.aspx? pubname-&edld-8nfc7d•-3b•b-4100-b4d6- f7d97a72bae3&PNUM-28 Visit to Cantérbury Bears https:Ilwww.actlontorxp.or8ln•w•l•rchlv•s106 -2024 Our friends at Enfants de la Lune in France have been great ambassadors for Little Ted who has been frequenting their channels helping with rare disease advocacy for French patients. We continue to build our network of collaborators and partners through membership and alliances with the following: Global Skin British Association of Dermatologists RARE Revolution Charity Partner Global Genes Advocacy Members nos &otés Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Patient This year. with the addition of paid st8ff. the work has continued to develop our core services. Shipping of patient protection packs has continued as well as providing ongoing support to families. We have 81so been able to continue our relationship with the specialist XP clinic at Guys and St Thomas, Hospital and provide a joined-up approach for families. attending the clinic in person when appropriate. International demand continues to increase with patient cohorts countries such as Italy. Norway and India reaching out for our support. The recruitment of two staff members has increased our capacity to deliver patient services and develop our fundraising infrastructure. Families continue to need our support. not only for patient protection packs but also for protection for their homes and cars to ensure that they have a safe environment in which to live and travel. Supporting you support.actionforxp.org With our new website we have made it easier than ever to access support: P3tient support reqiiesr. www.actionforxp.orglpatient-support-enquiry.html Action advice hiib.. Project breakaway (recreation and leisure)= httPS'.Ilwww.actionforxp.orglproject-breakaway.html Travel grant application= httP:l/vrnw.actionforxp.orgluploadsl11110191110944351 medical_travel_financial_assistance_advice_final.pdf https:Ilwww.actionforxp.orglaction-advice-hub.html Scliools lUb. https:Ilwww.actionforxp.org/schools-hub.html Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Research and scientific advancment Our partnership with 123Genetix continues to pioneer the use of Al-driven virtual clinical trials and stem cell-based disease modelling to accelerate drug development for rare diseases like Xeroderma Pigmentosum (XP). We now need to progress this work and have initiated discussion with Cytochroma. whose technology produces patient-specific IPSC organoids and high-throughput screening. The collaboration aims to improve early- stage drug testing. expand genome coverage, and validate new therapies aimed at delaying or halting neurological progression. ethically and efficiently. Despite promising technology, progress has been hindered by funding challenges. Limited financial support has delayed critical validation steps, slowed engagement with partners. and restricted infrastructure growth. As 8 result, the transition from proof-of-concept to scalable solutions is paused. highlighting the urgent need for strategic investment and partnerships to realize the full impact of these innovative platforms for rare disease communities. Promotion of equality and diversity We continued to work on our XP and Me comic project. Incorporating new stories around sport and leisure shared by members of our teen community. Work is ongoing for the final phase of this project to be completed in 2025. Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Fundraising This year has brought both challenges and small but meaningful wins for Action for XP. Like many small charities, we continue to navigate a difficult fundraising landscape. with limited grant opportunities and growing competition for funds. Despite these obstacles. our determination to sustain and grow our support for the XP community remains strong. Community fundraising is a growing area of focus for us. Although we're still in the early stages of building wider connections. we're incredibly grateful to the individuals and families within our community who h8ve reached out to 8sk for help on how to take part in future fundraising activities on our behalf. Every eff ort, no matter how big or small, makes a real difference 8nd helps keep our mission moving fonvard. We were also fortunate to receive 8 few successful grants this year, including funding from the British Association of Dermatologists (BAD) for our website redevelopment and a Globalskin grant to support the translation of our Little Ted books enabling more families around the world to access vit81 information in their own18n8U8ge. Although fundraising remains a challenge, we continue to adapt, learn, and explore new ways to connect with supporters and funders. Our commitment to those 8ffected by XP remains unwavering. and with each sm811 success, we move closer to creating a stronger, more sustainable future for our charity and the families we serve. Building partnerships The NHS funded Xeroderma Pigmentosum (XP) Multi- Disciplinary clinic was established in April 2010 to provide expert clinical care for patients thought to have or diagnosed with XP. For further information please visit https:l/vMw.guysandstthomas.nhs.uklour- serviceslxeroderma-pigmentosum-xp Action for XP is an integral part of the service giving feedback on the patient experience of the service as well as providing and fun iDg photo protection, Little Ted education packs and UV meters, distributed at clinic. We also provide financial assistance for patients to attend the clinic and fund the mental health counselling service. support@actionforxp.org vMw.actionforxp.org
Finances This ye8r has continued to be 8 financially chellenging year. Community funding hit an all time low, with no income coming from community fundraising, a first in our 13 ye8r history. This reflects the immense pressure our community face with the current cost of living crisis. We are extremely grateful to our small but dedicated private donors, collectively raising £1,900. Our fundraising off icerfs efforts yielded successful results. securing four gr8nts: A total of £ll.000 from Clinuvel across two gr8nts in the year to support photo protectiory £l.000 from the British Association of Dermatology to allow us to update our website and £9,921 from Children in Need for much needed core running costs. The18rgest costs this year relate to vit81 staff ing costs. alongside patient photoprotection. Little Ted Book and Beer project and our mental health support service. We close the accounts with a year-end deficit of ~£29.906.77. This reflects the continued challenges for sm811 ch8rities in both raising funds through community fundraising and grant giving and increased costs. Grant givers are recording higher numbers of applications and we are finding eligibility criteria is becoming increasingly exclusive of small ultra-rare disease organisations like ours who operate on a glob81 level. rebecca.actionforxp.org Funding summary £3,031.07 £21,921.00 £54,858.84 £44,723.14 Donations, giving back Grant funding Expenditure Closing balance Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Projects costs Patient Protection (hats/visors, gloves, film, UV meters) £8,229 Travel Grants £631 Little Ted Book and Bear project £3,617 Mental Health Support £2,960 XP Comic Book project £960 Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
Leave a gift Could you leave a gift in your will ? "Leaving a gift in your will helps secure our services long into the future, creating a lasting legacy for the global xeroderma pigmentosum community. IF YOU WOULD LIKE TO SPEAK TO SOMEONE ABOUT LEAVING A GIFT IN YOUR WILL OR TO MAKE A REGULAR DONATION NOW PLEASE GET IN TOUCH WITH VICTORIA ON: fundraising@actionforxp.org Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
The Teen comic feedback The next 12 months will be pivotal for Action for XP as our small but dedicated team look to both support our community and balance funds. 11 I really enjoyed sharing my story with the comic book creators to show how young people can still participate in sports and hobbies. l also really enjoyed learning about the experiences of the others who took part We foresee a challenging financial time ahead which is echoed across small charities in the UK. That said our terrific team and board and working hard to ensure that we can meet our aims. Our priorities for 2025-2026 will include the following: Stabilising funds to meet the needs of our operational and financial strategy. Teen comic participant feedback Developing phase 2 of the teen comic project and expanding youth engagement. Continue to support families with photoprotection and social support Continuing community engagement to understand the priorities of our diverse community. I FUTURE Build on the initial success of the mental health support project to develop group programs that complement the one-to-one counselling service. We are committed to achieving these goals and look forward to the positive impact they will have on our community Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
We'd like to thank all our donors for their Special thanks to this year's grant funders: Children in Need The British Association of Dermatology Clinuvel With thanks to our private donors: FUNDED BY 4r1 Action for XP (SCIO) Charity no: SC045465 www.actionforxp.org
APPENDIX 3 OSCR Scottish Charity Regulator Independent examiner's report on the accounts Report to the i Charty name trusteeslmembers of Action for XP Registered charity , SC045465 number On the accounts of the charity for the perfod Period start date Dall Month Period end date Month Year 024 Day Year 01 to 31 03 2025 Set out on pages (remember to include the page numbers of addrtional sheets) Respectlve The charity's trustees are responsible for the preparation of the accounts in accordance responsibilities of with the terms of the Charities and Trustee Investment (Scotland) 2005 Act and the trustees and examiner Charities Accounts (Scotland) Regulations 2006. The charity trustees consider that the audit requirement of Regulation 10(1) (d) of the Accounts Regulations does not apply. It is my responsibility to examine the accounts as required under section 44(1) (c) of the Act and to state whether particular matters have come to my attention. Basis of Independent My examination is carried out in accordance with Regulation 11 of the Charities examinerfs ststement Accounts (Scotland) Regulations 2006. 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 seeks explanations from the trustees concerning any such matters. The procedures undertaken do not provide all the eviden that would be required in an audit and, consequently, I do not express an audit opinion on the accounts. Independent examiner's In the course of my examination, no matter has come to my attention Egtlw- statement which gives me reasonable cause to believe that in any material respect the requirements: to keep accounting records in accordance with section 44(1) (a) of the 2005 Act and Regulation 4 of the 2006 Accounts Regulations, and to prepare accounts which accord with the accounting records and comply with Regulation 9 of the 2006 Accounts Regulations have not been met, or 2. to which, in my opinion, attention should be drawn in order to enable a proper e reached. Date: Signed: Name: Relevant professional qualification(s) or body (if any): È- 10-25 Address: "Please delete the words in the brackets if they do not appty. If the words do apply, set out those matters which have come to your attention on the following page.
APPENDIX 3 Disclosure section Only complete rf the examiner needs to highlight material problems. Give here brief details of any items that the examlner wishes to disclose