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2025-09-30-accounts

NEPHROTIC SYNDROME TRUST

UNAUDITED ANNUAL REPORT 30 SEPTEMBER 2025

Charity Number 1107601

CHALMERS & CO (SW) LIMITED

Chartered Accountants Trading as Chalmers & Co.

6 The Linen Yard South Street Crewkerne Somerset TA18 8AB

NEPHROTIC SYNDROME TRUST

UNAUDITED ANNUAL REPORT

YEAR ENDED 30 SEPTEMBER 2025

CONTENTS PAGES
Reference and administrative details 1
Trustees annual report 2 to 7
Independent examiner's report 8
Receipts and payments account 9
Statement of assets 10
Notes to the accounts 11to 12

NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

The board of trustees Mr D Yearsley Dr M Saleem Mrs W Cook Ms G Benson Mrs L Mathias-Lukins Dr G Welsh Mrs S Jenkins (resigned – 11 June 2025) Dr W Ding Gillian Coleman (appointed 9 June 2025) David Cook (appointed 12 November 2025) Rachel Labour (appointed 29 January 2026) Charity registration number 1107601 Principal office 167 The Close Salisbury SP1 2EZ Independent examiner S M Bachrach, Chartered Accountant Chalmers & Co (SW) Limited Chartered Accountants Trading as Chalmers & Co. 6 The Linen Yard South Street Crewkerne Somerset TA18 8AB Bankers HSBC 13 Chapel Street Stratford Upon Avon Warwickshire CV37 6ET

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

The trustees have pleasure in presenting their report and the unaudited accounts of the charity for the year ended 30 September 2025 as set out on pages 5 to 9. The accounts have been prepared in accordance with the accounting policies set out on page 8 and comply with the Trust Deed and applicable law.

STRUCTURE, GOVERNANCE AND MANAGEMENT

The charity is governed by its declaration of Trust dated 12 October 2004 and was registered with the Charity Commission on 13 January 2005 and amended 20 January 2021, registered number 1107601.

Reference and administrative details including the principal office address and details of trustees who served the charity throughout the year are shown in on page 1 of the financial statements. All trustees are appointed by a resolution of the trustees in accordance with the Trust Deed. Formal trustee training will be provided on an ad hoc basis as required.

OBJECTIVES AND ACTIVITIES

The main charitable object of the charity is to promote research for the benefit of the public by the promotion and funding of research into the causes and treatment for Nephrotic Syndrome carried out at Bristol University laboratories.

The Charity aims to support the research team to enable them to find new more effective therapies and treatments for all classifications of Nephrotic Syndrome. It also aims to raise awareness of Nephrotic Syndrome and to support the NS community by providing a hub of information and resources via its website and through all social media channels, support groups and annual conferences.

When planning the activities for the year, the trustees have considered the Charity Commission’s general guidance on public benefit and, in particular, the specific guidance for charities for the advancement of health and the saving of lives. The trustees believe the activities set out above and further described below under ‘achievements and performance’ clearly demonstrate the charity’s commitment to providing an identifiable public benefit and that access to this benefit is not restricted in any way.

ACHIEVEMENTS AND PERFORMANCE

Fundraising Update : The charity raised £76,938 in the year ended 30 September 2025. It was acknowledged that this was a significant result for the size of the charity.

The Wing Walk event took place in May 2025, having been postponed, yet most donations had already been received. A fabulous team of ten individuals organised by Paul Bishop bravely and kindly took part in this incredible challenge to raise vital funds in excess of £11,000 including gift aid..

It has been challenging to maintain a balance between funding and support. It was acknowledged that it is often the people with the sickest children who contribute the most. Wendy continues to look into several grants to fund core costs, but many are either oversubscribed or the charity does not fit the criteria.

There is a plan to establish a dedicated fundraising team in 2026 to include younger volunteers. A review of the social media reach has shown that there has been a decline due to algorithm changes and support for this area is being sought from the university media students.

Chesfield Golf Course and Paul continue to be champions of fundraising with Paul’s plans for a World Record Marathon Event taking shape.

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

App Update :

We currently have around 65 users. which is very disappointing. We have identified one problem causing the slow uptake: it is currently essential for people to be signed up to the RaDaR registry first. This can take time if people's forms are not processed quickly, or if they don't receive acknowledgement of their sign-up. We have brought this issue to the attention of staff at RaDaR and our app developer. Our App developer has found a way forward, but the RaDaR registry say they cannot have people using the app without signing consent forms first due to data protection. We are planning a meeting mid June 2026, to discuss a resolution to this issue and how to promote the app more efficiently. The plan is to create a promotional video that demonstrates the app's screens utilising the remaining balance of funding.

A patient day took place during the year in Stirling, Scotland, with the next National Information Day to be held in Manchester. Other roadshows are also planned.

Research:

Parasol ‘Endpoint’ project

Professor Moin Saleem is working on research related to Parasol. The website continues to be updated with articles from Dr Gavin Welsh and Dr Wen Ding.

Background

A major problem for trials that test any new drug in Nephrotic Syndrome is in the ‘endpoints’ used to judge whether this new drug is effective. Currently the regulators (in particularly the FDA, Federal Drug Agency, in the USA only allow a drug to be approved for patient use if the endpoint used is progression to kidney failure. This is hugely problematic, as kidney failure takes many years, so any trial needs to last several years long at the very least. This is both impractical (patients are very unlikely to consent) and hugely expensive. For this reason many pharmaceutical companies are reluctant to start new trials in Nephrotic Syndrome even if the new drug they have is very promising in its treatment profile.

The Solution

For this reason, NephCure (a patient organisation in the US) has helped to convene a group of clinical and scientific experts, patients, industry, and the FDA, to put their heads together to solve this problem, and to come up with a new endpoint that is much easier to measure in any clinical trial. The way to do this is to gather data from international patient registries, and work out which clinical measurement(s) correlates best with long term kidney outcome (survival). That measurement can then be used as a new endpoint in future clinical trials.

The Team

This is a truly international group of experts, and the UK has been represented by the RaDaR registry (Professors Moin Saleem and Danny Gale). RaDaR is the largest of the international registries used, and has been heavily used by the statistics experts on the group to derive the best endpoint

The Outcome

After 3 working group meetings over the last year, the results were finally presented at the American Society of Nephrology congress in October 2024.

The outcome was that an endpoint of reduction of proteinuria to a certain level can be confidently used to judge whether a new drug has been successful, and would likely be accepted by the FDA to approve that new drug for patients.

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

Implications

This is a huge advance, as it now means that trials could be completed within 2 years, and perhaps even within a year or less, depending on the effect of the drug in the trial. Hopefully this means that industry will bring new drugs to be trialled more readily and quickly into patient populations.

Extract from Professor Moin's Saleem's latest newsletter (December 2025) -.

The work of NeST

‘Fundraising and support from NeST underpins all of these activities, by allowing important projects to be kick started, and to gain that vital momentum that then attracts government, charity and industrial research funding for the more ambitious projects. On a smaller scale this support is also used to fund projects undertaken by medical and science students, an important step in enthusing and training the next generation of researchers.

We in the research team hugely enjoy the patient days in particular, where we can interact with the most important people involved in the research, you!

Patient involvement in research is vital to us, guiding our priorities, and inspiring us to do the best work possible to ultimately find a cure for this disease.’

Industry Collaborations

It is important to work closely in partnerships with industry (e.g. Pharmaceutical companies) in order to take promising leads from the laboratory to develop new medicines and clinical tests. We have a strong list of collaborators, including those that have invested in the NURTuRE collaboration.

Additional projects are underway that are promising leads towards discovering new medicines. One of these is a screening program we have undertaken with the European Lead Factory. This is a project that uses our innovative cell culture resources in the laboratory as a tool to screen tens of thousands of chemical compounds to discover which ones reverse disease that is modelled in those cells. This has discovered several interesting new compounds that are now being tested further for their use in reversing disease in certain types of Nephrotic Syndrome. We hope that some of these compounds will look suitable to take forward towards clinical development, and that is the stage where we can approach our industry colleagues to adopt this as a drug development program.

Future plans

There are plans being coordinated nationally across the paediatric nephrology community to accelerate exciting clinical trials to test newly available drugs, in nephrotic syndromes and other children’s kidney diseases. This was funded this year by LifeArc (a large charity) to the tune of £10M, which opens up a whole new opportunity to boost kidney disease research in the UK.

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

Mental health remains a concern for many members, and the funding of relaxation and well-being sessions for children with emotional/mental health issues continues.

There are also plans to produce a promotional video which will feature a NeST Young Ambassador.

NeST's 20th Birthday Celebration da y was a wonderful day at the Research laboratories in Bristol. Many people, including children, attended. All the children received a special gift of a Jellycat Lion, made possible by an unexpected grant. Fabulous talks by clinicians from Bristol and London. Wendy Cook presented a special tribute with slides to all the Research staff and many hard working individuals and families who have selflessly helped build the charity with her and have undertaken many incredible fundraisers over the years. Wendy Cook was commended for all her hard work over the years.

Everyone was thrilled to have an amazing tour around the labs which everyone loved! Professor Gavin Welsh and Professor Moin Saleem and the research team ensured it was a fantastic day. Lunch was divine! The NeST birthday cake was so big and so amazing!

There has been some lovely feedback from people to say how much they enjoyed the day. A few being:

"Was amazing thank you for having us"

"What a great day. So inspiring to hear about the research and the magnificent fundraisers"

" What a fantastic day - we all enjoyed it so much thank you"

" Thank you for such a perfect day. It was so special. So nice to meet you properly, hear about the research and get to see the labs! Lunch was lovely too; the whole day was just perfect.

Wendy Cook – MBE

In September 2025 Wendy Cook was presented with an MBE in recognition of her outstanding work on behalf of NeST.

The following is an extract from a recent newsletter:

As I grow older, I find myself reflecting on life’s sunshine and showers. Living with Nephrotic Syndrome (NS) can sometimes feel like weathering a hurricane, and those of us in the NeST family know this all too well. Yet, amidst the challenges, there are moments of joy and pride that remind us of our community's strength.

One such high point for me this year was being awarded an MBE for services to people with Nephrotic Syndrome. On a beautiful sunny day, 30th September, I attended Windsor Castle with my family for the investiture. Walking the impressive Long Walk, entering the castle, and being greeted by Lifeguards, Gurkhas, Busbies, and a live quartet was unforgettable. The staff made everyone feel special, and in the historic Waterloo Room, I was humbled to receive my honour from Prince William, the Prince of Wales. This moment will remain one of the highlights of my life — and I accepted it not just for myself, but on behalf of the entire NeST family. Your dedication, fundraising, and involvement since our launch in 2005 have made this possible.

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

Bristol Hospital Donation

It was agreed to postpone a donation to the Research team this year as donations were lower than anticipated, although this is not entirely surprising due to the ongoing decline in our country's economy. It is hopeful that grant applications can be secured to ensure that Wendy's position and ongoing expenses which provide vital support to the NeST community are covered so that donations towards research can return to past levels.

RISK MANAGEMENT

The trustees have initiated a wide-ranging review of the major risks to which the charity is exposed, covering all identified, relevant areas including financial risk and risks associated with personnel. Risks have been identified, assessed and safeguards have been put in place to eliminate or mitigate such risks as far as is reasonably possible.

FINANCIAL REVIEW

Total receipts during the year were £85,470 (2024 - £77,832), with the majority of income arising from donations. Total payments were £56,700 (2024 - £85,815), the major expenditure in 2024 being the donation to United Bristol Hospitals as disclosed further in the Receipts and Payments Account on Page 6.

Net funds therefore increased by £28,770 (2024 – decreased by £7,983) to £95,952 (2024 - £67,182). £86,365 of these funds being free reserves.

RESTRICTED FUNDS

Restricted funds include those which have been donated and used for three projects during the year:

1. App development. This project commenced in the latter part of 2019 and received further funding during 2021. This fund has a balance carried forward of £5,750.

2. Future App Development Grant. £10,000 was received during 2022. Spending in the year covered the balance of the Patient Day expenses after using the specific grants received for that days costs together with 5% of Wendy’s salary covering the development and promotion of the app prior to its launch. The fund balance carried forward amounted to £428.

3. Patient Day Grants. £1,000 was received during the year to fund the patient day. This grant was fully utilised during the year.

4. KRUK Donation. £1,000 was received during the year to help fund the 20 year celebration day. This donation was fully utilised during the year.

5. Puebla Charitable Grant. £5,000 was received during the year. This has been used to fund the balance of the 20 year celebration day, Support for families and for a Support Group meet up together with children’s mental health support. The fund balance carried forward amounted to £3,339.

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NEPHROTIC SYNDROME TRUST

REFERENCE AND ADMINISTRATIVE DETAILS

YEAR ENDED 30 SEPTEMBER 2025

RESERVES POLICY

The trustees closely monitor the charity's financial position and seek to ensure that reserves are sufficient to meet its ongoing liabilities. The charity does not aim to hold substantial unrestricted reserves, but to pass any surpluses on to those in need.

Signed by order of the trustees:

Mr D Yearsley

Mrs W Cook

Approved by the trustees on the 22[nd] June 2026

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NEPHROTIC SYNDROME TRUST

INDEPENDENT EXAMINER'S REPORT TO THE TRUSTEES OF NEPHROTIC SYNDROME TRUST

YEAR ENDED 30 SEPTEMBER 2025

I report to the trustees on my examination of the accounts of the Charity for the year ended 30 September 2025.

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 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)(b) of the Act.

Independent Examiners Statement

I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:

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.

S M Bachrach, Chartered Accountant Independent Examiner Chalmers and Co Chartered Accountants 6 The Linen Yard South Street Crewkerne Somerset TA18 8AB

Dated: 22 June 2026

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NEPHROTIC SYNDROME TRUST

RECEIPTS AND PAYMENTS ACCOUNT FOR THE YEAR ENDED

30 SEPTEMBER 2025

RECEIPTS
Donations
Grants received
Interest received
PAYMENTS
Donations to United Bristol Hospital
Wages & pension costs of administrator
Wages of the app administrator
Insurance
Promotional costs
Fundraising costs
Travel
Costs for Mental Health Care
Celebration Day costs
Patient Day costs
Support Group Meet Up
Support for families
Website cost
Donorfy onboarding costs
Just Giving fees
Go Cardless and online giving fees
Printing, stationery and postage
Sundry expenses
Accountancy and payroll fees
Telephone
Computer expenses (inc. internet)
Bank & Paypal Charge
---
PURCHASE FIXED ASSETS
----
=
NET OF PAYMENTS
Transfer between Funds

Bank and cash funds brought
forward
Bank and cash funds carried
forward		 2025
2025
2025
2024
Unrestricted
Restricted
Total
Total
Funds
Funds
Funds
Funds
£
£
£
£
78,305
-
78,305
75,617
-
7,000
7,000
2,158
165
-
165
57
----------------------------- -
-------------------------------
----------------------------- -
-------------------------------------- -
78,470
7,000
85,470
77,832
-
-
-
31,000
33,840
-
33,840
30,829
-
-
-
1,750
236
-
236
216
842
-
842
861
7,191
-
7,191
6,828
168
-
168
619
-
70
70
490
-
1,245
1,245
-
-
1,851
1,851
5,898
-
484
484
-
-
862
862
-
1,122
-
1,122
1,020
-
-
-
1,194
1,508
-
1,508
1,450
981
-
981
187
859
-
859
720
357
-
357
320
3,516
-
3,516
678
318
-
318
496
582
-
582
406
82
-
82
207
-----------------------------------
-------------------------------
-------------------------------------- -
-------------------------------------- -
50,602
4,512
56,114
85169
586
-
586
646
---------------------------------- -
-------------------------------
-------------------------------------- -
-------------------------------------- -
52,188
4,512
56,700
85,815
================ ===================
=============================
================= ===================
================= ===================
26,282
2,488
28,770
(7,983)
-
-
-
-
26,282
2,488
28,770
(7,983)
60,153
7,029
67,182
75,165
86,435
9,517
95,952
67,182
=============================
=============================
=============================
=============================

The notes on pages 11 and 12 form part of these financial statements.

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NEPHROTIC SYNDROME TRUST

STATEMENT OF ASSETS

FOR THE YEAR ENDED

30 SEPTEMBER 2025

2025 2024
£ £
CASH FUNDS
Bank current account 95,952 67,182
----------------------------- - ----------------------------- -
95,952 67,182
============================= =============================
£9,517 (2024 - £7,029) restricted funds are included in the totals listed above.
ASSETS RETAINED FOR THE CHARITY’S OWN USE
Laminator at cost (4 April 2011) 10 10
Laptop (5 September 2019) 540 540
Lenovo 510 Pentium Desktop PC (October 2019) –
scrapped - 320
Argos printer at cost (2 October 2020) 78 78
Computer monitor (15 November 2020) 75 75
Laptop for roadshows (2 April 2021) 399 399
Office Chair (28 March 2023) 190 190
Office Desk (5 September 2023) 318 318
Laptop for volunteer (19 April 2024) 646 646
Canon Printer (18 February 2025) 95 -
Lenovo PC (5 June 2025) 491 -
============================= =============================

We confirm that the above Statement of Assets is an accurate record of the Charity’s assets at the year end.

Mr D Yearsley

Mrs W Cook

22 June 2026

The notes on pages 11 and 10 form part of these financial statements.

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NEPHROTIC SYNDROME TRUST

NOTES TO THE FINANCIAL STATEMENTS

FOR THE YEAR ENDED

30 SEPTEMBER 2025

1. ACCOUNTING POLICIES

Basis of accounting

The accounts have been prepared on a receipts and payments basis and in accordance with the trust deed and applicable United Kingdom accounting standards, the Statement of Recommended Practice "Accounting and Reporting by Charities" (SORP 2005) and the Charities Act 2011.

Restricted and Unrestricted Funds

General accumulated unrestricted funds represent the funds of the charity that are not subject to any restrictions regarding their use and may be applied in achieving any of the objectives of the charity as decided by the trustees.

Restricted funds

These relate to incoming resources which have been received subject to specific conditions imposed by the donor and binding on the Trustees and may only be applied in accordance with the restrictions placed on the donation.

Income is treated as unrestricted unless a restriction is placed upon it by the donor or by the terms of the fundraising venture undertaken by the charity.

Grants

Grant income is recognised on a receivable basis. Where a restriction is placed on the use of the grant, the amount of the grant is included in restricted funds. Grant expenditure is recognised on a payable basis.

2. STAFF COSTS

The charity had one employee during the year.

3. STOCKS

At the end of the year the charity held a stock of items which are for resale. The original cost of these items was £150 (2024 - £250).

4. RELATED PARTY TRANSACTIONS

The trustee Mrs W Cook received remuneration and pension of £33,834 during the year arising from her employment as administrator. (2024 – 30,829)

No remuneration was in respect of her duties as a Trustee.

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NEPHROTIC SYNDROME TRUST

NOTES TO THE FINANCIAL STATEMENTS FOR THE YEAR ENDED

30 SEPTEMBER 2025

2025 2025 2025 2025 2025 2025 2024
Future App
NNF KRUK Puebla
Development		 Patient Total Total
Funds Funds Funds
Fund		 Day Funds Funds
£
 £ £
 £ £ £ £
BREAKDOWN OF RESTRICTED
INCOME & EXPENDITURE ITEMS
RECEIPTS
Grants received - 1,000 5,000 - 1,000 7,000 2,158
----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- -----------------------------
- 1,000 5,000 - 1,000 7,000 2,158
PAYMENTS
Wages & pension costs - - - - - - 3,200
Celebration Day costs - 1,000 245 - - 1,245 -
Patient Day costs - - - 851 1,000 1,851 5,898
Support Group Meet
Up - - 484 - - 484 -
Costs for Mental
Health Care - - 70 - - 70 -
Support for families - - 862 - - 862 -
----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- -----------------------------
- 1,000 1,661 851 1,000 4,512 9,098
PURCHASE OF
FIXED ASSETS - - - - - - -
----------------------------- ----------------------------- ----------------------------- ----------------------------- - ---------------------------- - ----------------------------- ------------------------------
- 1,000 1,661 851 1,000 4,512 9,098
============================= ============================= ============================= ============================= ============================= =========================== ============================
NET OF PAYMENTS
 - -
 3,339 (851) - 2,488 (6,940)
============================= ============================= ============================= ============================= ============================= ============================= =============================
TRANSFER
BETWEEN FUNDS - - - -
 - - -
----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- ----------------------------- ---------------------------------
-
 - 3,339 (851) - 2,488 (6,940)
============================= ============================= ============================= ============================= ============================= ============================= =============================
FUNDS B/FWD 5,750 - - 1,279 - 7,029 13,969
============================= ============================= ============================= ============================= ============================= ============================= =============================
FUNDS C/FWD 5,750 - 3,339 428 - 9,517 7,029
============================= ============================= ============================= ============================= ============================= ============================= =============================

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NEPHROTIC SYNDROME TRUST

NOTES TO THE FINANCIAL STATEMENTS

FOR THE YEAR ENDED

30 SEPTEMBER 2025

We confirm that the Receipts and Payments Accounts on pages 9 to 12 have been prepared from the books and records of the Charity. All other relevant information has been made available for their preparation.

We also confirm that the Receipts and Payments Accounts are an accurate record of the Charity’s activities in the period.

Mr D Yearsley

Dated: 22 June 2026

Mrs W Cook

Dated: 22 June 2026

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