OpenCharities

This text was generated using OCR and may contain errors. Check the original PDF to see the document submitted to the regulator.

2025-03-31-accounts

CASK RESEARCH FOUNDATION End of year trustees report

Table of Contents

01 02 What is CASK? This annual Who are CASK report - general Research Foundation?

03

Meeting our legal requirements

04

05

06

Reference and Structure, Objectives and a administrative governance and activities details management

07

08

Achievements Financial Review and performance

09

Funds held as custodian trustee on behalf of others

10

10 11 Public benefit Plans for the statement future period

12

Signed statement

2

Section 1

What is CASK?

CASK is the name of a gene essential for healthy development of the brain. Mutations in this gene cause a range of inherited disorders that all affect brain function, including 'MICPCH' and 'X-linked intellectual disability with or without nystagmus'. To simplify things, we often use the term 'CASK' to describe all disorders.

CASK gene mutations are ultra rare. The brain doesn't grow as it should, giving the child microcephaly (literally meaning 'small head'). Several children show abnormal brain morphology, such as a small cerebellum and pons. Children with a CASK disorder can have a multitude of problems, including intractable epilepsy, inability to feed or drink, inability to walk, low tone, poor balance, global developmental delay, vision and/or hearing loss.

Some affected males have mutations

resulting in intellectual disability whilst those males with severe mutations often pass away in infancy. Females with CASK have an unknown prognosis but some are classed as having a life-limiting condition and rely on hospice care.

Most children with CASK cannot

communicate other than by crying, smiling or laughing. Caring for a child with CASK is exhausting since many suffer from sleep disturbances. Often, children with CASK cannot play independently due to the inability to control their limbs effectively. The children who are less medically complex can display challenging behaviours due to their low cognitive function.

Who are CASK Research Foundation?

CASK Research Foundation (or CRF) is a UK-wide Charitable

Incorporated Organisation (CIO) registered with the Charity Commission in England and Wales.

It was founded in 2022 by Laura Hattersley, BSc, MSc, who is the mother to a child with MICPCH. CRF commenced work as an organisation in March 2022, setting about to create an informative network, connect with researchers and clinicians, create annual family meet ups and fundraise in order to fund scientific research to accelerate the path to treatments. CASK Research Foundation is also known informally as CASK Research UK.

. Section 2

This annual report

This Annual Report explains our aims and how we have gone about achieving them. It has been prepared in accordance with the applicable legal requirements. It gives a balanced view of the charity’s structure, aims, objectives, activities and

performance. Importantly, it describes our primary sources of funding, and describes how the money was spent.

It highlights the main activities we have undertaken.

.

3

Section 3

Meeting our legal requirements

We have still prepared our accounts on a “Receipts and Payments” basis as per our obligation. This means that our accounts contain a statement summarising all money received and paid out in the financial year, and a statement of our assets and liabilities at the end of the period.

The detailed legal requirements for this report are set out in The Charities (Accounts and Reports) Regulations 2008 which provide a legal underpinning for many of the recommendations made in the applicable Charities SORP.

The headings used in our report follow this guidance, as follows:

Section 4

Reference & administrative details

4.1. The Charity’s Name

The Charity’s name is CASK Research Foundation (informally CASK Research)

4.2. The Charity’s Registration

Number

The Charity’s number is 1197434

4.3. The Address of the Principal Office

The Charity does not own any premises, but operates via a network from their own homes. The Charity’s formal legal contact is through the Chief Executive Director, whose name and address are as follows:

Laura Hattersley

33 Finchdean Road, Rowlands Castle, Hampshire. PO9 6DA

4.4 Names of Trustees

Chief Executive Director Laura Hattersley, 33 Finchdean Road, PO9 6DA

Treasurer

Elizabeth Cook, 11 Reedsmere Walk, Comberbach, CW9 6BZ

Sarah Sanders, 2 Newtown Cottages, George Street, Staplehurst, TN12 ORA

Andrea Leforte, 12 Pitfold Avenue, Haslemere, Surrey, GU27 1PN

4

Section 5

Structure, governance & management

5.1 Particulars of the Governing Document

The Charity has a formal Constitution, which was approved by the Charity Commission in January 2022. The Charity is run by the Trustees, as a management committee. Any new Trustees will be appointed at the Charity’s Annual General Meeting,

The Charity operates by means of committee meetings, held on a videoconference basis. The minutes of the meeting are formally recorded by the Secretary.

Section 6

Objectives & activities

6.1 The Purposes of the Charity

CRF was formed in order to primarily accelerate research into CASK gene mutations and the associated conditions.

It is our mission to enable medical advances to improve the lives of people with CASK gene disorders

Our Vision: A world where people with a CASK gene mutation have treatments and ultimately a cure.

6.2 Activities Undertaken 1 April 2024- 31st March 2025

  1. CASK RARE-X Data Collection Programme.

  2. European expansion

  3. Family support

  4. 4.·Gift of £40,000

  5. 5.·Completion of research projects

  6. 6.·Conferences and events

  7. Awareness

  8. 8.·Mental health support

  9. 9.·Won £21,000 worth of pro-bono work from Costello Medical

  10. 10.·Creation of the Kicking CASK podcast

  11. 11.·Assisting in drug discovery for cerebellar degeneration

  12. 12.·Created Kicking CASK shop – raise awareness and raise funds

5

6.2.1 RARE-X DCP

The CASK RARE-X Data Collection Programme - a patient owned, free, secure, streamlined, international registry. This is an initiative delivered by Global Genes. We now have over 140 patients registered from 21 countries (up from 120 last reporting year). See section 7.4 for more detailed information.

6.2.2 Expanded into Europe

We currently have two Polish volunteers and 1 volunteer resident in Ireland. We have our CASK Fast Facts leaflets translated into German and Polish.

6.2.5 Completion of Research

6.2.6 Conferences and events

6.2.3 Family Support

We continue to offer monthly virtual socials, regular newsletters and an annual family meet up in the UK. In July 2024 we organised the first ever International CASK Family meeting where expert clinicians gave talks and answered parents’ questions. This was attended by over fifty families.

6.2.7 Awareness

6.2.4 £40,000 gift

We gifted £40,000 to University of Bristol to enable Professor Hodge’s work on creating a translational platform for CASK disorders to continue. The team continue to apply for grants to help fund this. The gift has also enabled the creation of the CASK clinical registry, sponsored by University of Bristol. This will enable patient data to be collected and analysed by NHS clinician Dr Amin for at least the next three years.

6

6.2.8 Mental Health support

·We have partnered with the charity Rare Minds to offer our community mental health support specifically designed for people living with a rare disease. With the assistance of Rare Minds we created a survey for UK families, to assess the mental health impact of caring for someone with a CASK-related disorder.

6.2.9 Costello Medical

·We won a contract to receive £21,000 of pro-bono work from the health company Costello Medical. They are creating an infographic for the community to share insights from the RARE-X data collection platform. The aim of this project is to feedback information to caregivers in visually appealing ways as well as improve uptake of the RARE-X DCP. The results will be shared with the community on July 15th,

6.2.12 The Kicking CASK Shop

·CASK Research partnered with TeeMill, a sustainable online retailer, to deliver CASK and general additional needs merchandise to the community. Profit margins are minimal however it is bringing a regular trickle of revenue.

6.3 Statement of compliance

The Trustees are in agreement that the CIO is a public benefit entity, complying with the definition in FRS 102.

6.2.10 Podcast creation

Laura started a podcast called the Kicking CASK Podcast as a way to easily share updates with the global community, build community and bring about more support. It is aired on YouTube and Spotify.

6.2.11 Supporting Dr Tabuchi

A Japanese scientist, Dr Tabuchi, has found out more about the cerebellar cell death (in animal models) and has found a mechanism to prevent it. We have been helping him find a way to develop this discovery into a viable therapeutic.

7

Section 7

Achievements and performance

7.1 Our main missions and aims

It is our mission to advance the education on the CASK gene and its disorders. We achieved this aim by assisting with the Cambridge university research study as well facilitating the growth of the RARE-X DCP and sharing findings with the community by our partnership with Costello Medical.

Another aim is to promote and protect the physical and mental health of UK sufferers. Partnering with Rare Minds and having monthly virtual socials enables us to provide some mental health support to families.

222

mailchimp subscribers. 12% increase in 12 months

56%

Average opening rate for monthly newsletter

7.2 Our mission to support and provide advice

We have achieved this by:

7.3 Mailchimp

38

No. of UK patients officially registered in the UK registry

144

international members of the Global CASK Registry RARE-X

The Mailchimp account was created in June 2022. We now have 198 subscribers. We send out a monthly newsletter. This has an average opening rate of 56% based on information from Mailmodo

(https://www.mailmodo.com/guides/mailchimp-openrate/), 21% classed as a 'good' opening rate for a newsletter.

8

There are now four CASK non-profits working with the CASK RARE-X data collection programme: Association Enfants CASK France; Angelina CASK Neurological Research Foundations, Project CASK and CASK Research Foundation.

7.4 RARE-X DCP

The CASK RARE-X Data Collection

Programme was officially launched in early September 2022 by CRF. We now have over 140 participants signed up and answering surveys.

The registry is international and RARE-X are rolling out more languages every year.

7.4.1 Quality of data

We now have a substantial registry however the completion or initiation of surveys can be very low. This is why we asked Costello Medical to look into this and create an infographic to help parents see the value in the data.

9

7.4.2 Data obtained

Only verified researchers and clinicians are able to gain access to the entire data sets. As a PAG leader and having completed the CITI compliance training our Director Laura hasReaders appreciate accurate information access to basic data sets that are sporadically delivered out by RARE-X. Even this simple data provides the opportunity to help improve patient care, educate and facilitate advocacy on behalf of ones child.

Example 1: Question from a parent on a Facebook group

"We had an appointment yesterday with XXs genetic doctor and he’s asked me if all/most of our kids have Microcephaly and are below the average weight Centile for their age. Are any of our CASK kids on any kind of steroids for their growth hormones as he is really wanting XX to start them but I am still in two minds..."

Rather than relying on Facebook and reporting unverified information back to a clinician, this parent could now show their geneticist this table of offical results from 36 respondents.

Example 2: Epilepsy incidence

"The published prevalence of epilepsy is as high as 50% (cohort of 34). Our current findings show a lower prevalence (29%). A larger data set, properly analysed, will help us understand occurrance rates better.

10

7.5 CASK Coalition Road map

T he Global Roadmap was created and agreed by all members of the CASK Coalition. In 2023/24 the CASK Coalition acted on all sections of the Roadmap, either by funding projects or by improving the Patient Data Collection Programme uptake. All members are committed to the Roadmap and use it to direct their actions and funding.

11

Section 8

Financial Review

8.1 The Reporting Period for this Report

The Charity’s financial performance reported below is for the period from 1st April 2024 to 31st March 2025.

8.2 Our Accounts and Bankers

The charity operates using only one bank account as follows: Natwest Bank Account Name: CASK Research Foundation Sort Code: 52-41-20 Account Number: 43690068

8.3 Financial Performance: Receipts and Payments, and Assets and Liabilities

We have prepared our accounts on a “Receipts and Payments Accounts” basis, which means that we have recorded cash flows in and out during the accounting period. The data has been transferred from the Charity’s internal spreadsheet onto a standard Charity Commission Form CC16a.

8.3 cont.

The Charitable Incorporated Organisations Regulations 2012 do require the following additional information: a) particulars of any guarantee given by the CIO, where any potential liability under the guarantee is outstanding at the date of the statement of assets and liabilities; and b) particulars of any debt outstanding at the date the statement of assets and liabilities which is owed by the CIO and which is secured by an express charge on any of the assets of the CIO

Section A of the form presents the receipts and payments, disaggregated into the Charity’s main areas of activity. A1 shows these receipts; A3 shows these payments.

Section B presents the Statement of Assets and Liabilities at the End of the Period. We have no fixed or material assets of any significance. We have no property assets. The financial assets of the Charity are therefore the current funds in our Natwest Account, and that is the only account we hold.

The Examiner has agreed that the Natwest account accurately expresses the assets of the Charity, as the influence of these future sums is minor in respect of the total turnover, and the profitability of the Charity.

12

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examinerfs report on the accounts Section A Ind•pond9nt Examlnor'• R•port Report to the tru8to•81 memb•rs of CASK Ilnsonrch Foundic Ilon Ona ounts for th• year ended 31 March 2024 Charity no (rf any) on pages l ￿pO[l lo the Iruslees on my examinalK)n of the accounts of the atrf)ve charrty I"Ihe Tmst-l tor the year ended 31103 r2024. the charity Iwstees of the Trust, you are resFrfJnsible for the preparalm e accounls in acc(Kdance wrth the requirements of the Charits Ad e Act"). ResponslbS1rties and basis of report o 201 I report in under sectio have folk)wed t under Sect￿ 14 pect of my examinat￿n of the Tnjst's wK)unts carried out 45 of the 2011 Act and in carrying out my examination. I applubk DIrect￿n$ given by the Charty Commiss)n bl of the Act. mination. I conffirn that no material matters have nectin with Ihe examination which gives me aterial resFed". ot kepl in accordance with section 130 of Independent examinerfs statement I have comFdeled my come to my attentM)n in cause to believe that in, an a￿oUnting records wer the Act or the accounts do rK)t acclxd the accounting records I have no concwns and have come acr no other matters in connection wtth the examinatK)n lo which attention sho be drawn in order to enable a proFer understanding of the accounts to be re Signed: Date: 1410812024 Name: Karen Luckman FCCA Relevant professional qualification{sl or body (if any)- ACCA Address: 7 Heathdene Bnghton Road Burgh Heath Surrey KT20 6AW IER October 2018 13

IHARITY COMMISSION FOR ENGLAND AND WALES CASK Rsar¢h Foundatfjon 1197434 Receipts and payments accounts CC16a For the period from To 0110412023 31103Q024 Sec.'ion A Receipts and payments Unrestricted funds to tho Theare¥t Restricted funds Endowment funds Total funds Last year toth• r￿r￿lE t•th• n￿r•￿t É toth• n••r••t£ A1 RètÈlpts Sales DonatiOll8 Donations- Fayres Donations- Paypal Donations- FaGeixy)k Donations- Amazon Donations- Sponsored 8V8nts Donations- Bingo Donations- Advent Trail Donations- Raffles Donations- CAF Donations- Open Gardens Donations- Easy FundraisiTrJ Donations- MerGhandise [k)natI￿S- Wi115 338 783 133 3,008 2,991 338 783 133 3.008 1991 639 2,590 10,938 2,176 1,904 1.624 728 1,49B 1269 B50 1M39 1A39 803 721 721 7.499 10377 326 221 10,377 326 221 8.000 Sub total(Gross income for AR) 44,148 24333 A2 Asset and investm•nt sales. table . Sub total Total receipts 44.148 44.148 24.333 A3 Payments Grants Given- UC Dawes Cure Cask Cost of Sales Materials Subcontractor Costs CASK Meet ups Documentary Costs LiGen5es and Permtts Advertising and Promotion Legal and Professional Fees Subscriptions BanklFinance Charg8S Insurance MistdaneoLS 23J73 219 23,373 269 180 324 1,950 1,550 20 1.710 186 220 82 23 96 604 Sub total 28A29 975 A4 Asset and investment purchases, Is•e tabl•) Sub total 28.429 28,429 975 Net ofrecelM￿fpaYments) AS Transfers between funds A6 Cash funds last year end Cash funds this year end 15.719 15.719 23.358 23,358 39.077 23.358 39,077 23.358 14

Section B Statement of assets and liabilities at the end of the period Unfestficted funds Restricted funds Endowment funds to n•aro•t£ Cat•gori•s D•tails to n•ar••t £ to n•aro•t £ 1 Cash funds Nots¥esl Bar 38,574 Payp81 503 Total cash funds 39.077 lagTee ba4inre¥V￿￿ reWpIsar￿ Pa￿entS Unrestricted funds Restricted funds Endowment funds Detalls to n•ar••t £ to n•are•t £ to n••re•t £ B2 Other moneta ssets Fund to whl¢h •8Bet bolon ¢urr•ni vlu• D•tal Co•t loptlon411 B3 Investment assets Fund to whlch 8091 bglong• Curr•nt valu• loptlon•ll Deta515 CoBt lopllon•ll B4 Assets retained for the charity's own use Fund to whlch Amount du• Wh•n du• lonal D•talls 85 Liabilities Signed by one or trustees on behalf of all the trustees nature Pnnl Nan Oate of roval i2èbeth Cook 71812024 14t) Laura Hattersley 0510812024 15

8.3 Cont.

The accounts have been scrutinised by an independent accountant holding ACCA status. The Examiner concludes that there are no material matters of concern, and that the accounts were prepared in accordance with section 130 of the relevant Act.

8.4 Policies on Reserves

Our current position is that we seek to hold a minimum bank balance of £1500. We have minimal overheads and so this provides a more than sufficient buffer to allow us to undertake our activities, and to pay our suppliers and fees promptly. It is the Charity’s view that such a minimum balance would have been more than sufficient to meet our obligations. This value has been based on analysis of the previous years incomings. This is highlighted in our Finance Policy.

Section 9

Funds held as custodian trustee on behalf of others

CRF does not hold any assets in respect of other charities.

Section 10

Public benefit statement

8.5 Funds in Deficit

We do not have any funds in deficit. Our only funds are, as has been described, held in the Natwest account. This is in healthy surplus, as the charity is currently saving these funds in order to pay for the projects and future plans as outlined in section 11.

We believe we have complied with the Readers appreciate duty to have due regard to the guidance accurate information on public benefit published by the commission in exercising their powers or duties.

16

Section 11

Plans for the future period

Below we set out that we wish to undertake the following activities in the financial year 2025/2026:

Roll out the Global CASK Census, in collaboration with partner PAGs.

Section 12

Signed statement

I, Laura Hattersley, hereby sign this Annual Report as a true record of the activities of the Charity for the year from 6th April 2023 to 5th April 2024.

Signed: …………………………………………………………..

Name: Laura Hattersley

Position: Chief Executive Director, CASK Research Foundation

Date: ………………………………….16/7/2025

Having been duly authorised to do so by the Trustees of the Charity.

17

Acknowledgements

Many thanks to the following people who made this report possible and who have assisted the projects mentioned.

Our Scientific and Clinical Advisory Board , for guidance and support and exploring/creating research avenues

The Trustees for being a sounding board, providing momentum, advice and guidance

Our colleagues from AECF and ACNRF

We thank you for your ongoing support of our programme

CASK Research Foundation 33 Finchdean Road Rowlands Castle PO9 6DA

www.caskresearch.org info@caskresearch.org

Charity Name Cask Research UK

No (if any) 1197434

Receipts and payments accounts For the period Period start date Period end date To from 01/04/2024 31/03/2025

CC16a

Section A Receipts and payments

----- Start of picture text -----
Unrestricted Restricted Endowment
Total funds Last year
funds funds funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
- - - - -
Sales - - 338
Donations 4,632 4,632 783
Donations - Fayres - 133
Donations - PayPal 1,302 1,302 3,008
Donations - Facebook - 2,991
Donations - Amazon - 88
Donations - Sponsored events 14,356 14,356 9,422
Donations - Bingo 2,199 2,199 1,439
Donations - Coffee Morning 1,241 1,241
Donations - Advent Trail - 803
Donations - Raffles - 721
Donations - CAF 7,507 - - 7,507 7,499
Donations - Open Gardens 200 - - 200 10,377
Donations - Easy Fundraising 158 - - 158 326
Donations - Merchandise 20 - - 20 221
Donations - Wills 100 - - 100 6,000
Donations - Art Auction 6,609 - - 6,609 -
Donations - Golf day 905 - - 905 -
Sub total (Gross income for
AR) [ 39,229 ] - - 39,229 44,148
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total - - - - -
Total receipts 39,229 - - 39,229 44,148
A3 Payments
Grants Given - UC Davies Cure Cask C - - - - 23,373
Grants Given - University of Bristol 65,000 65,000
Cost of Sales 7,517 - - 7,517 269
Materials - 180
Subcontractor Costs - 150
CASK Meet ups - -
Documentary Costs - 1,950
Licenses and Permits - - - - 20
Advertising and Promotion 379 - - 379 1,710
Legal and Professional Fees - - - - 50
Subscriptions 581 - - 581 604
Bank/Finance Charges - - - - 28
Insurance 96 - - 96 96
Miscellaneous 3 - - 3 1
Sub total [ 73,576 ] - - 73,576 28,429
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total [ - ] - - - -
Total payments 73,576 - - 73,576 28,429
Net of receipts/(payments) - 34,347 - - - 34,347 15,719
A5 Transfers between funds - - - - -
A6 Cash funds last year end 39,077 - - 39,077 23,358
Cash funds this year end 4,731 - - 4,731 39,077
----- End of picture text -----

CCXX R1 accounts (SS)

24/01/2026

1

Section B Statement of assets and liabilities at the end of the period

Categories
Signed by one or two trustees on
behalf of all the trustees
B2 Other monetary assets
B4 Assets retained for the
charity’s own use
B1 Cash funds
B5 Liabilities
B3 Investment assets		 Details
Natwest Bank
Paypal
Total cash
funds
receipts and payments
account(s))
Details
Details
Details
Details
Signature		 Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
4,681
-
50
-
-
-
4,731
-
OK
OK
Unrestricted
funds
Restricted
funds
to nearest £
to nearest £
-
-
-
-
-
-
-
-
-
-
-
-
Fund to which
asset belongs
Cost (optional)
-
-
-
-
-
Fund to which
asset belongs
Cost (optional)
-
-
-
-
-
-
-
-
-
Fund to which
liability relates
Amount due
(optional)
-
-
-
-
-
Print Name
Laura Hattersley
Liz Cook		 Endowment
funds
to nearest £
-
-
-
-
OK
Endowment
funds
to nearest £
-
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
Current value
(optional)
-
-
-
-
-
-
-
-
-
When due
(optional)
Date of
approval
30/11/2025
30/11/2025

CCXX R2 accounts (SS)

24/01/2026

2

CHARITY COMMISSION FOR ENGLAND AND WALES Independent examiner's report on the accounts Section A Independent Examlner's Report Report to the trustees CASK Research Foundation On accounts for the year ended 31 March 2025 Charity no (if any) 1197434 Set out on pages Irpwti•Thib- In innl! irla Ihp naqa ni Imhero nf addilinnal shpetRI I report to the trustees on my examination of the accounts of the above charity ("the Trust") for the year ended 3110312025. 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 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: 3011212025 Name: Thomas Morris Relevant professional qualification(s) or body (if any): CIMA Address: clo CASK research foundation 33 Finchdean Road Rowlands Castle, P09 6DA IER Oct 2018