ACTION FOR BPAN
Trustees, Annual Report
For the period 17 October 2024 to 30 September 2025
Registered Charity Number: 1210529
Principal Office: Westfield Lodge, Old Mill Lane, Bray, Maidenhead,
SL6 2BG
l. Objectives and Activities
Action for BPAN is a Charitable Incorporated Organisation (CIO) established
to improve the lives of individuals and families affected by Beta-propeller
Protein-Associated Neurodegeneration (BPAN), an ultra-rare, progressive
neurological disorder that causes developmental delay, epilepsy, movement
disorders and progressive neurodegeneration.
The charity exists to:
Advance scientific and medical research into BPAN and potential
treatments, including gene therapy.
Raise awareness of BPAN amongst healthcare professionals,
researchers, policymakers and the wider public.
Support individuals and families affected by BPAN through
inforn]ation, connection and community.
Promote collaboration between clinicians, researchers, charities and
families to accelerate progress towards effective treatments.
The charity was founded by Kelly Sayers and Nicole Harper following the
diagnoses of their daughters, Emily and Isabella, with BPAN. At the time
there was no UK charity dedicated exclusively to BPAN, leaving families
with limited support and researchers without a dedicated organisation to

coordinate fundraisin(y for potential treatments. Action for BPAN was
established to address both of these unmet needs.
Prior to the charity's formation, Kelly Sayers led significant fundraising
efforts as a private individual, helping to provide the initial seed funding that
enabled researchers at Great Orn]ond Street Hospital and University College
London to begin developing a pre-clinical BPAN gene therapy programme.
Action for BPAN was then established by Kelly Sayers and Nicole Harper to
build on those foundations by creating a sustainable organisation capable of
funding research, raising awareness and supporting families affected by
BPAN over the long term.
In planning the charity's activities, the trustees have had due regard to the
Charity Commission's guidance on public benefit.
2. Activities and Achievements
Although this represented the charity's first reporting period, significant
progress was made in establishing Action for BPAN as the UK'S first charity
dedicated exclusively to BPAN. The trustees focused on building a
sustainable organisation capable of accelerating research, raising awareness
and supporting families, while laying strong foundations for future growth
through fundraising, governance, partnerships and community engagement.
Fundraising
The charity established multiple fundraising channels including online giving
platforn]s, community fundraising campaigns, individual gyiving, corporate
support and org)anised fundraising events. Income was generated primarily
through community fundraising and individual supporters, demonstrating
strong public engagement with the cliarity's mission. Early relationships with
corporate supporters and charitable organisations were also established,
providing important foundatioiis for future growlh,

During its first reporting period, the charity generated income of
£118.116, reflecting the exceptional commitment of its supporters,
voluiiteers, corporate partners and the wider community.
Highlights from the reporting period included the charity's first Founders,
Snowdon Challenge on 20 June 2025, which brought together 55 climbers
to raise funds and awareness for BPAN, and the charity's inaugural Golf
Day on 8 September 2025, which welcomed over 50 participants for a day
of fundraising, networking and awareness. These events not only generated
valuable income but also strengthened community engagement, introduced
new supporters to the charity's work and laid the foundations for future
flaoship fundraising events.
Supporting Research
Throuohout the reporting period, the charity has built a good working
relationship with leading BPAN clinicians and researchers at Great Orn]ond
Street and University College London to help progress the development of a
pre-clinical gene therapy programme for BPAN and ensure accuracy of
Charity infornlation. The trustees remained committed to building the
financial resources required to accelerate this work and ultimately support
progression towards future clinical trials.
Building on the initial seed funding secured prior to the charity's forn]ation,
Action for BPAN'S first year focused on creating a sustainable fundraising
and awareness platforn] capable of supporting this long-tenn research
programme. By the end of the reporting period, the charity had established
itself as the UK'S principal charity dedicated exclusively to BPAN, providin
an important foundation for continued investment into research, increased
national awareness and long-terni support for families affected by the
condition.
The charity has established itself as a trusted partner for clinicians,
researchers and families affected by BPAN, helping to bring these groiips

together around a shared ambition of accelerating the development of
effective treatments for this ultra-rare condition.
Raising Awareness
During its first year, the charity significantly increased awareness of BPAN
throu(yh the launch of the Action for BPAN website, social media, digital
communications, community engagement, fundraising events and public
outreach. As the UK'S first charity dedicated solely to BPAN, Action for
BPAN began establishing itself as a recognised voice for families affected by
this ultra-rare condition, helping to increase understanding amongst the
public, healthcare professionals and potential supporters.
Supporting Families
The charity has developed a growing network of families living with BPAN,
providing opportunities for connection, shared experiences and peer support.
This work helped reduce isolation for families navigating an exceptionally
rare diagnosis while strengthening collaboration across the BPAN
community. The charity has also had commitment from the National Institute
of Child Health to hold a patient day at Great Orn]ond Street Hospital in 2026
to bring together families and researchers for a day of exciting updates and
family connection.
Building a Sustainable Charity
Alongside its charitable activities, the trustees focused on establishing robust
governance, financial systems, fundraisiiig platfoms, policies, digital
infrastructure and operational processes necessary to support the charity's
long-tern] growth.
This included implementing appropriate fiiiLincial controls, securing
insurance, developing the charity's digjilal presence, establishing fiindraisin
infrastructure, delivering successful fundrclising eveiits aiid biiilcling

relationships with researchers, clinicians, families, supporters and corporate
partners.
The charity's achievements during its first year would not have been possible
without the dedication of volunteers, fundraisers, families, ambassadors and
supporters who freely gave their time, skills and expertise in support of the
charity's mission.
Throuoh the dedication of its trustees, volunteers, supporters and families,
Action for BPAN established strong foundations during its first year of
operation, creating the infrastructure, partnerships and momentum required to
accelerate research whilst building a lasting source of support for those
affected by BPAN.
3. Financial Review
This was the charity's first financial reporting period.
Income for the period totalled £118.116.
Expenditure for the period totalled £18.278.
Income was generated through individual donations, community fundraising
initiatives, online giving platforms, corporate support and fundraising events.
The trustees were encouraged by the strong level of public support received
during the charity's first year of operation.
Expenditure was carefully managed and directed towards furthering the
charity's charitable objectives. The principal areas of expenditure included
fundraising event delivery, website and digital infrastructure, insurance,
governance, financial management systems and other essential operating
costs associated with establishing the charity.
The trustees sought to minimise administrative expenditure wherever
possible, ensuring that resources were used efficiently and that the maximum
possible proportion of funds raised could be directed towards achieving the
charity's objectives.

The charity concluded the reporting period with total funds of £99.838,
providing a strong financial platform from which to continue pursuing its
charitable objectives. Throughout the period, the trustees remained
committed to prudent financial stewardship, ensuring that donations were
managed responsibly and applied in support of the charity's mission. This
approach has enabled the charity to enter its second year in a secure financial
position with the capacity to further expand its impact.
Reserves Policy
As this was the charity's first reporting period, the trustees, priority was to
establish sufficient unrestricted reserves to support the charity's ongoing
operations and provide financial stability whilst continuing to invest in its
charitable objectives. The trustees recognise the importance of maintaining
appropriate reserves to manage unforeseen circumstances whilst ensuring that
funds are applied effectively in pursuit of the charity's mission.
The Trustees have set a policy reserve of £5.000 for core running costs. At 30
September 2025, unrestricted reserves totalled £99.838
The trustees will review the reserves policy annually as the charity continues
to grow.
In addition to its unrestricted reserves, the charity holds funds that have been
raised to support the BPAN gene therapy research programme being
undertaken by Great Orn]ond Street Hospital and University College London.
These funds are held securely, including in an interest-bearing savin(ys
account where appropriate, until they are required to meet the agreed research
funding commitments. The trustees monitor these funds regularly to ensure
they remain available to support the charity's long-terni chc2ritable objectives.
4. Structure, Governance and Management
Action for BPAN is a Charitable Incorporated Orgaiiiscilion (CIO) g)overiiLcI
by its Conslitution.

The trustees are responsible for tlie overall governance, strategic direction
and financial stewardship of the charity. They ensure that the charity's
resources are applied solely in furtherance of its charitable purposes and that
appropriate governance arrangeinents are maintained.
Trustees are appointed iii accordance with the charity's governing document
and meet regularly to oversee the charity's activities, finances, strategy and
risk management.
The trustees serving during the reporting period were:
Kelly Sayers - CEO
Nicole Harper - secretary
Schalk Visser - treasurer
Susannah Kemmis - legal advisor
All trustees serve on a voluntary basis and bring a combination of lived
experience, professional expertise and governance oversight to the strategic
development of the charity.
Trustee Remuneration
No trustee received any remuneration or financial benefit from the charity
during the reporting period. Trustees were entitled to reimbursement of
reasonable out-of-pocket expenses incurred in carrying out their duties. £0
was reimbursed during the reporting period.
5. Risk Management
The trustees regularly reviewed the principal risks facing the charity and
implemented appropriate measures to mitigate them.
During the reporting period, the principal risks identified included:
Maintaining sustainable fundraising income.

Ensuring appropriate governance and financial oversight during a
period of rapid growth.
Managing the charity's reliance on volunteers.
Maintaining sufficient resources to support both research and charitable
activities.
To mitioate these risks, the trustees established appropriate financial controls,
adopted governance policies, held regular trustee meetings and maintained
close oversight of financial performance and strategic priorities. Risk
mana(yement will continue to be reviewed and developed as the charity
grows.
6. Plans for Future Periods
The trustees intend to build on the strong foundations established during the
charity's first year by:
Continuing to grow sustainable fundraising income through community
fundraising, corporate partnerships, trusts and foundations, and major
fundraising events.
Increasing investment in research aimed at developing effective
treatments and, ultimately, a cure for BPAN.
Supporting the progression of the BPAN gene therapy prooramme
towards future clinical trials.
Expanding national and international awareness of BPAN through
education, advocacy and media engagement.
Strengthening support for individuals and families affected by BPAN
by developing opportunities for coiiiiection, information sh2( ring and
collaboration.
Building new partnerships with researchers, clinicians, charitable
organisations and induslry to accelerate progjress for those living Ivith
BPAN.

The trustees remain committed to ensuring that Action for BPAN continues
to grow responsibly whilst maximising the impact of every pound raised in
pursuit of its charitable objectives.
7. Public Benefit Statement
The trustees confirn] that they have complied with their duties under the
Charities Act 2011 to have due regard to the Charity Commission's guidance
on public benefit when planning and carrying out the charity's activities.
Action for BPAN provides public benefit by advancing medical research into
an ultra-rare neurological condition, raising awareness of BPAN amongst
healthcare professionals and the wider public, supporting families affected by
the condition, and fostering collaboration between researchers, clinicians and
the BPAN community to accelerate the development of future treatments.
8. Approval and Declaration
This Trustees, Annual Report was approved by the Board of Trustees on
ZZ. 07 . 2& and signed on its behalf by:
Kelly Sayers
Chair of Trustees
Signature:
Date:
.07.26

,MQ (li aii"i)
1210529
CHARITY COMMISSIO
FOR ENGLANO AND WALE
-,harity Name
Actlon for BPAN
Receipts and payments accounts
CC16a
For the period
from
Period stait Oc*it
1711012024
Perioa end adi¢
To
3010912025
Section A Receipts and payments
Unrestricted
funds
to the nearest
Restricted
funds
to the nearest £
Endowment
funds
to the nearest £
Total funds
Last year
to the nearest £
to the nearest £
A1 Receipts
Donations
Grants
Fundraising events
Sponsorship
96,296
500
10,908
10,412
96,296
500
10,908
10,412
Sub total(Gross income for
AR)
118,116
118,116
sse
an
(see table).
Inves
men
sa
es,
Sub total
118,116
118,116
Total receipts
A3Pa
ments
Cost of fundraising events
Adve￿sIng and marketing
Insuran
IT sofvare and consumables
Accountancy and software subscnptions
Administration and set-up costs
17.676
224
99
154
25
100
17,676
224
99
154
25
100
Sub total
A4 Asset and investment
Sub total
Total payments
18,278
18,278
Net of receipts/(payments)
A5 Transfers between funds
A6 Cash funds last year end
Cash funds this year end
99,838
99,838
99,838
. 99,838
CCXX R1 accounts (SS)
2110712026

Section B Statement of assets and liabilities at the end of the period ,
Unrestricted
funds
to nearest £
29,838
Restricted
funds
to nearest £
Endowment
funds
to nearest £
Categorle8
Detall8
B1 Cash funds
Bank current account
Bank Savings account
70,000
Total cash funds
99,838
(agree balance8 Wlth recelpts and payments
account(s))
Unrestricted
funds
to nearest £
Restrlcted
funds
to nearest £
Endowment
funds
to nearest £
Details
Fund to which
asset belon
Current value
tional
Details
Cost (optional)
B3 Investment assets
Fund to which
asset belon
Details
Cost (optlonal)
Current value
tional
B4 Assets retained for the
charity's own use
Fund to whlch
Ilabill
relates
Amount due
(optlonal)
When due
(optional)
Detalls
B5 Liabilities
Syned by one or two trustees on
behaff of all the trustees
Signature
Print Name
Date of
roval
Kell Sa
ers
2110712026
Ccll R2 accounts (SS)
2110712026

CHARITY COMMISSION
FOR ENGLAND AND WALES
Independent examiner's report on the
accounts
Section A .
Independent Examiner's Report
Report to the trustees
?rity Nime
Action for BPAN
On accounts for the year
ended
30 September 2025
Charity no
(if any)
1210529
Set out on pages
1and2
I report to the trustees on my examination of the accounts of the above
charity ("the Trust") for the year ended 31109 12025.
Responsibilities and
basis of report
As the charity's trustees, you are responsible for the preparation of the
accounts in accordance with the requirements of the Charities Act 2011
("the Act.).
I report in respect of my examination of the Trust'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)(b) of the Act.
Independent I have completed my examination. I confirm that no material matters have
examiner's statement come to my attention in connection with the examination which gives me
cause to believe that in, any material respect:
the accounting records were not kept in accordance with section 130
of the Charities Act. or
the accounts did not accord with the accounting records" or
the accounts did not comply with the applicable requirements
concerning the form and content of accounts set out in the Charities
(Accounts and Reports) Regulations 2008 other than any requirement
that the accounts give a 'true and fair, view which is not a matter
considered as part of an independent examination.
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.
Please delete the words in the brackets if they do not apply.
Signed:
Date:
2110712026
Name:
Jason Smith
Relevant professional
qualificatlon(s) or body
(if any):
ICAEW
Address:
5 Moat Close
Sevenoaks
TN13 2HZ
IER