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,mi￿A￿ .
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
Da￿ll 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