Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Alternating Hemiplegia of Childhood UK (AHC UK) ## � April 2024 May 2025 **Charity Registration Number:** 1192701 **Charity Address:** 82A Sutherland Avenue, Biggin Hill, Westerham, Kent, TN16 3HG ## Current Trustees: Chair: Katherine Behl Treasurer: Jo Brown Secretary: Lyndsey Chand Abhishek Behl Sue Kemp 1 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## AHC UK Mission statement: To assist and inspire all affected by Alternating Hemiplegia of Childhood through: - � - Support for AHC families provide a lifeline for families newly diagnosed as well as those struggling with the complexities of living with AHC; - Information and advocacy � raise awareness of what AHC is and be the voice of AHC families in the UK to campaign on behalf of those affected by or caring for those with AHC; - Research � promote, encourage and facilitate (through fundraising and connecting families with researchers) effective therapies, treatment and towards a cure of our �one-in-a-million� condition. ## **No one, no family, shall ever be alone** ## AHC UK Charity Objectives To preserve and protect the physical and mental health of families and individuals affected by alternating hemiplegia of childhood and associated conditions by:- - a. providing support and creating and maintaining communication channels between those persons who act as family carers and supporters so as to disseminate knowledge, experience and thereby promote both the health and quality of life of AHC patients and their families; - b. raising awareness and education of the medical profession and other relevant professionals (including but not limited to psychologists, care workers, school teachers, therapists and suchlike), together with the general public, on the nature of AHC (and associated conditions) and its implication for families; - c. acting as an advocate with public servants and organisations within the UK (other than those included in object 2) so as to become the voice of AHC families; - d. promoting, encouraging and facilitating research into the diagnosis, effective management and therapies, and potential curative procedures; and - e. establishing and maintaining close links with counterpart organisations, researchers and such like that are based outside the United Kingdom, and to disseminate the growing body of knowledge into this rare condition amongst interested persons and parties within the UK 2 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Structure, Governance and Management AHC UK is Charitable Incorporated Organisation (CIO) established on the 8[th] December 2020. Our constitution, the CIO foundation, was adopted following this. The information included below is taken from this document and provides an outline of the roles of Trustees and their management of the charity. ## Functions and duties of charity trustees The charity trustees shall manage the affairs of the CIO and may for that purpose exercise all the powers of the CIO. It is the duty of each charity trustee: - (a) to exercise his or her powers and to perform his or her functions in his or her capacity as a trustee of the CIO in the way he or she decides in good faith would be most likely to further the purposes of the CIO; and - (b) to exercise, in the performance of these functions, such care and skill as is reasonable in the circumstances having regard in particular to: - a. any special knowledge or experience he or she has or holds himself or herself out as having; and, - b. if he or she acts as a charity trustee of the CIO in the course of a business or profession, to any special knowledge or experience that it is reasonable to expect of a person acting in the course of that kind of business and profession. ## Eligibility for trusteeship - (a) Every trustee must be a natural person. - (b) No individual may be appointed as a charity trustee of the CIO: - a. if he or she is under the age of 18 years; or - b. if he or she would automatically cease to hold office under the provisions of clause [12(1)(e)]; or - (c) No one is entitled to act as a charity trustee whether on appointment or on any re-appointment until he or she has expressly acknowledged, in whatever way the charity trustees decide, his or her acceptance of the office of charity trustee. 3 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Number of charity trustees - (a) There must be at least three charity trustees. If the number falls below this minimum, the remaining trustee or trustees may act only to call a meeting of the charity trustees, or appoint a new charity trustee. - (b) There is no maximum number of charity trustees that may be appointed to the CIO. - (c) Where practical, at least one-half of the trustees should have a direct and demonstrable connection to Alternating Hemiplegia of Childhood. Furthermore, at least one-third of the trustees should have a direct family connection to someone who has Alternating Hemiplegia of Childhood. ## Appointment of further charity trustees - (a) Apart from the first charity trustees, every appointed trustee must be appointed for a term of three years by resolution passed at a properly convened meeting of the charity trustees. - (b) In selecting individuals for appointment as appointed charity trustees, the charity trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO. 4 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Retirement and removal of charity trustees A charity trustee ceases to hold office if he or she: - (a) retires by notifying the CIO in writing (but only if enough charity trustees will remain in office when the notice of resignation takes effect to form a quorum for meetings); - (b) is absent without the permission of the charity trustees from all their meetings held within a period of six months and the trustees resolve that his or her office be vacated; - (c) dies; - (d) in the written opinion, given to the company, of a registered medical practitioner treating that person, has become physically or mentally incapable of acting as a director and may remain so for more than three months; - (e) is disqualified from acting as a charity trustee by virtue of sections 178-180 of the Charities Act 2011 (or any statutory re-enactment or modification of that provision). Any person retiring as a charity trustee is eligible for reappointment. If there are concerns about whether a charity trustee remains eligible, the Trustees will hold an emergency meeting where a Vote of Confidence/No Confidence will be held. ## Taking of decisions by charity trustees Any decision may be taken either: 1. at a meeting of the charity trustees; or 2. by resolution in writing or electronic form agreed by a majority of the charity trustees, which may comprise either a single document or several documents containing the text of the resolution in like form to each of which one or more charity trustees has signified their agreement. ## Delegation by charity trustees The charity trustees may delegate any of their powers or functions to a committee or committees, and, if they do, they shall determine the terms and 5 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 conditions on which the delegation is made. The charity trustees may at any time alter those terms and conditions, or revoke the delegation. This power is in addition to the power of delegation in the General Regulations and any other power of delegation available to the charity trustees, but is subject to the following requirements: - (a) a committee may consist of two or more persons, but at least one member of each committee must be a charity trustee; - (b) the acts and proceedings of any committee must be brought to the attention of the charity trustees as a whole as soon as is reasonably practicable; and - (c) the charity trustees shall from time to time review the arrangements which they have made for the delegation of their powers. 6 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Financial Review ## Report Year ending May 2025 ## Income Over the last year the majority of our income has been through fundraising and donations to our account. These have included those set up through Amazon and Just Giving. This is the same as it was for the year ending April 2024. It is encouraging that many of our supporters are using different means of donating to our charity. We recognise however, that it would be great to highlight the amazing work that they are doing. Going forward, we hope to learn more about those raising money and promote their activities. ## Outgoings Over the last year, we have continued to complete outstanding transactions related to work over previous years. These should all be completed by the end of the next annual report. Our significant outgoings this year were to two different research projects. The first was a research project investigating the benefit of oxygen in AHC episodes based in France which started in 2024. The second was a project was a research project titled “Climate Change and Chronic Diseases: highly-resolved disease-specific pilot study” looking at the impact of temperature changes in chronic diseases including AHC. ## Future Commitments Discussions this year have included the commitment to a research project based at Leiden University that is due to start in 2026. This is a project involving patient organisations and charities from across Europe and North America. We are hopeful that we will have completed our funding contribution to this by the end of the next financial year. 7 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Financial Summary 2024-2025 |**Total Income**|�534|**Year end balance**|�62,377| |---|---|---|---| |**Total Expenditure**|�13,032|**Restricted funds**|�141| ## Reserves Policy AHC UK holds a Reserves Policy which is reviewed annually or if there are any changes required. It has been adjusted this year to include additional website and other administrative costs (email etc). There are no other changes to this. ## Other Assets As a charity, we do not hold any other assets. 8 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Objectives and Activities: 2024 -2025 |**Month**|**Activities**
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�������������������������������������|**A,B,C,D,E**| ## Achievements and Performance This last year has been focused on delivering pieces of work alongside research colleagues from events in the last few years. This has involved significant liaison work with researchers across Europe. We have also worked on building relationships with researchers in the UK which we continue to build on. 10 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 We continue to provide online contact for families and carers through our social media presence. A particular success over January and February 2025 was AHC Day and Rare Disease Day. We have had families approach us with difficult circumstances unable to access expertise in AHC professionally. We have supported them. This has included giving them links to publications, information sheets about AHC, information on the UK Rare Disease Framework. It has also included giving them information on who are the expert clinicians for AHC in the UK for children and separately for adults. It has also included giving them support to ask their local teams for referrals to these experts and outlined their rights to do this under the UK Rare disease Framework. We have supported families through changes in their circumstances related to AHC including diagnosis, changes in diagnosis, periods of illness, and end of life care. Katherine Behl, as research liaison and later chair of AHC UK, has undertaken a number of meetings with AHC UK researchers and our medical advisors virtually or by email discussion. This included ongoing work with Dr Simona Balestrini regarding the sleep questionnaire in AHC, and separately a number of meetings with Professor Sanjay Sisodiya (one of our medical advisors) which led to published papers included below, and the development of the research project on temperature impact in AHC. We have worked with a number of charities and AHC organisations around the work to increase our understanding of the research taking place. This has included Katherine Behl working with Cure AHC and others supporting the development of a patient-specific questionnaire investigating triggers for people with AHC. The USA organisations (Cure AHC) and Rare Hope have distributed the survey, they are overseeing this, and have generated important information. We have also been able to get involved in supporting a number of projects including financial support. Over the year, we have had numerous donations through Amazon, Just Giving, Ebay and through the details on our website. It is clear that those who support our charity are active and we look forward to hearing more from them about the events and activities they are involved in. 11 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Publications - K. Behl, �Alternating Hemiplegia of Childhood: Challenges in a changing climate�, Nature Reviews Neurology, April 2025, 21(4):171-172 - M.I. Gulcebi, S. Leddy, K. Behl, DJ. Dijk, E. Marder, M. Maslin, A. Mavrogianni, M. Tipton, D.J. Werring and S.M. Sisdiya, �Imperatives and � - c0-benefits of research into climate change and neurological disease , Nature Reviews Neurology, April 2025, 21(4):216-228 ## International Work AHC UK is a member of AHCFE (this has since been renamed AHC Europe) - � additionally Abhishek Behl remains on the executive board of AHC Europe. Katherine Behl continues to join multiple international meetings on research to discuss projects and collaboration as AHC International Alliance (AHCIA) no longer exists. Katheine Behl has been invited to attend Cure AHC USA meetings on their Executive board for cross-collaboration. All of the above work represents objectives: a, e ## AHC UK Charity Performance AHC UK led on and hosted the AHC and ATP1A3 10-year anniversary conference and 10[th] Symposium on ATP1A3 in disease (Edinburgh and online) in October 2022. There are ongoing pieces of work associated with this including research publications. These publications have been contributed to by members of AHC UK. They were published in 2025 and will be included in next year�s annual report. Continued to support families online All of the above work represents objectives: a, b, c, d, e 12 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Online and IT Performance AHC YouTube space - Interviews with researchers for families, clinicians and other researchers � Our previous online document for carers and professionals on AHC produced in collaboration with EpiCARE (European Reference Network for rare epilepsies) continues to be a valuable document for families and professionals. It continues to be translated to different languages, other than english, to support those across Europe. � Updated the website ongoing work. Including blogs. Emails/Newsletters Activity on social media platforms � Closed groups on social media for supporting families open to parents (or parent figures) of people with AHC and individuals with AHC. This provides a safe space for parents and primary carers to discuss difficulties with AHC. We moderate this as a charity. Ongoing contact with AHC organisations internationally to share information and support research and engagement. All of the above work represents objectives: a, b, c, d, e ## Future: Ongoing work to complete the reports required for the AHC and ATP1A3 10-year anniversary conference and 10[th] Symposium on ATP1A3 in disease. This includes research papers. We are looking forward to further financial support in research including international studies and UK based studies. Contributing, when asked, to the ATP1A3 symposium annually. 13 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Public Benefit The Trustees have had regard to the Charity Commission�s Guidance on Public Benefit. ## Benefit With regards to the benefit that AHC UK provides, this is inherent in our work with families, researchers and clinicians. In raising the profile of this ultra-rare condition, we increase awareness. It is through this, that we are able to highlight the need for research, education and support for individuals and families affected. ## Public Benefit Whilst AHC UK highlights the challenges faced by those diagnosed with the conditions, their families and carers it also seeks to provide wider benefit to the public through the engagement with clinicians and medical professionals as well as researchers. Public benefit is through the advancement of medical research for AHC and other associated conditions. These lead to the advancement of research approaches and techniques to benefit the wider public. In addition to this, through engaging with other rare disease charities, we seek to improve public awareness of AHC and similar rare and ultra-rare conditions. In doing so, we support improving understanding of the impact of these conditions within communities. 14 of 15 Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2024-2025 ## Review and Sign Off The above report has been reviewed and approved by the Charity Trustees. Katherine Behl (AHC UK) (Mar 28, 2026,6:45pm) Lyndsey Chand (AHC UK) (Mar 29, 2026,7:51pm) Johanna Brown (Mar 29, 2026, 8:50pm) **Katherine Behl Lyndsey Chand Jo Brown Chair Secretary Treasurer** 28 Mar 2026 15 of 15 **----- Start of picture text -----**
Charity Name No (if any)
Alternating Hemiplegia of Childhood UK 1192701
Receipts and payments accounts CC16a
For the period Period start date Period end date
To
from 01/05/2024 31/05/2025
Section A Receipts and payments
Unrestricted Restricted Endowment Last year total
Total funds
funds funds funds funds
to the nearest £ to the nearest £ to the nearest £ to the nearest £ to the nearest £
A1 Receipts
Donations 107 - - 107 3,253
Grants - - - - 4,985
Interest 147 - - 147 154
Fundraising 280 - - 280 340
- - - - -
- - - - -
- - - - -
- - - - -
Sub total (Gross income for
534 - - 534 8,732
AR)
A2 Asset and investment sales,
(see table).
- - - -
- - - - -
Sub total - - - - -
Total receipts 534 - - 534 8,732
A3 Payments
Grants paid in relation to conference 9,282 - - 9,282 2,000
Foreign charges 25 - - 25 181
Professional fees 3,660 - - 3,660 50
Travel costs - - - - 1,252
Bank fees 65 - - 65 60
Refunds - - - - 7,943
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
- - - - -
Sub total [ 13,032 ] - - 13,032 11,486
A4 Asset and investment
purchases, (see table)
- - - -
- - - -
Sub total [ - ] - - - -
Total payments 13,032 - - 13,032 11,486
Net of receipts/(payments) - 12,498 - - - 12,498 - 2,754
A5 Transfers between funds - - - - -
A6 Cash funds last year end 74,734 141 - 74,875 77,629
Cash funds this period end 62,236 141 - 62,377 74,875
**----- End of picture text -----**
CCXX R16 accounts (SS) 26/03/2026 16 ## Section B Statement of assets and liabilities at the end of the period |Categories
Trustee expenses
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
B5 Liabilities
B3 Investment assets
B1 Cash funds|Details
Bank balance
Details
Total cash funds
(agree balances with receipts and payments
account(s))
Details|Unrestricted
funds
to nearest £
62,236
-
62,236
OK
Unrestricted
funds
to nearest £
-
-
-
-
-
-
Fund to which
asset belongs|Restricted
funds
to nearest £
141
-
141
OK
Restricted
funds
to nearest £
-
-
-
-
-
-
Cost (optional)|Endowment
funds
to nearest £
-
-
-| |---|---|---|---|---| |||||-| |||||OK| |||||Endowment
funds
to nearest £
-
-
-
-
-
-
Current value
(optional)| ||||-
-
-
-
-|-
-
-
-
-| ||Details|Fund to which
asset belongs|Cost (optional)|Current value
(optional)| ||||-
-
-
-
-|-
-
-
-
-| ||Accountancy fees
Refunds in relation to conference costs
Refunds to Trustees
Grant income to be repaid to funders
During the period ended 31 May 2025, no exp
2025, £4,559 (2024: £4,559) is included in liabi
Details|Fund to which
liability relates
Amount due
(optional)
When due
(optional)
Restricted
3,711
Restricted
3,349
Unrestricted
1,500
Unrestricted
1,175
enses were reimbursed to Trustees (2024: £Nil). As at 31 May
lities owing to 2 (2024: 2) Trustees.||| ||Signature
Katherine Behl (AHC UK) (Mar 28, 2026,
6:45pm)
Lyndsey Chand (AHC UK) (Mar 29, 2026,
7:51pm)|Lyndsey Chand
Print Name
Katherine Behl
Jo Brown||Date of
approval
28 Mar 2026
29 Mar 2026
29 Mar 2026| |||||| Johanna Brown (Mar 29, 2026, 8:50pm) CCXX R17 accounts (SS) 26/03/2026 17