2023-04-30-accounts

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

Alternating Hemiplegia of Childhood UK (AHC UK)

� April 2022 April 2023

Charity Registration Number: 1192701

Charity Address: 75 Charlton Road, Southampton, SO15 5EU

Current Trustees:

Chair: Katherine Behl [acting chair]

Vice Chair/Research Liaison: Katherine Behl

Treasurer: Jo Brown

Secretary: Lyndsey Chand

Communication and Social Media: Abhishek Behl

Adult AHC Liaison: Sue Kemp

Previous Trustees:

Adrian Kowal (2020-2023)

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Charity Number: 1192701

Alternating Hemiplegia of Trustees Annual Report Childhood UK 2022-2023

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

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Alternating Hemiplegia of Childhood UK

Trustees Annual Report Charity Number: 1192701 2022-2023

Structure, Governance and Management

AHC UK is Charitable Incorporated Organisation (CIO) established on the 8[th] December 2020. Our constitution 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.

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Alternating Hemiplegia of Childhood UK

Charity Number: 1192701

Trustees Annual Report 2022-2023

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.

First charity trustees

The first charity trustees are as follows and are appointed for the term indicated against their name:

Adrian Kowal (Chair) (resigned 2022/23) - for five years
Vickey Lewis Kowal (resigned 2021/22) - for five years
Katherine Behl (Vice-Chair) - for five years
� Abhishek Behl - for five years � Johanna Brown (Treasurer) - for five years
� Lyndsey Chand (Secretary) - for five years
� Sue Kemp - for five years
� Jade Cook (resigned 2021/22) - for five years

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.

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Alternating Hemiplegia of Trustees Annual Report Childhood UK 2022-2023

Charity Number: 1192701

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:

at a meeting of the charity trustees; or
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 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:

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

(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.

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Alternating Hemiplegia of Trustees Annual Report Childhood UK 2022-2023

Charity Number: 1192701

Financial Review

Report Year ending April 2023

Following our bank account's establishment in March 2022, we received funds from the AHC Parents Support Group. This group was the predecessor of AHC UK and we continue to be in awe of the work they did in supporting families across the UK and are grateful for the agreed transfer of funds to AHC UK. These monies represented the fundraising work that has been done over the years and we will see continue.

Our work continued with plans to host the AHC and ATP1A3 10-year anniversary conference and 10[th] Symposium on ATP1A3 in disease in October 2022. As the event was hosted in the UK, we were financially responsible for delivering the event and worked with AHC charities round the world to ensure that the event was accessible for families and carers. Significant work was done alongside AHC charities around Europe in applying for, and successfully being awarded, a grant to host this from the European Joint Programme for Rare Diseases (EJPRD). Pledges were made from AHC charities around the world to ensure that the event was a success. Money from these pledges that was not used was returned to these charities for their use. Completion of the grant report has been submitted and accepted. The final written parts from the event are being completed and the final funding for the event will go towards these being open access for families, researchers, clinicians and supporters.

At the end of the year, 2022, we received a significant donation from work done by one of our committee members and their family. Again, we are grateful for the incredible work done by family and friends who are offer their time and efforts to raise money for the charity.

Other work this year has seen the establishment of AHC UK as being a charity you can donate to through Facebook, JustGiving and Ebay.

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Alternating Hemiplegia of Childhood UK

Trustees Annual Report 2022-2023

Charity Number: 1192701

Financial Summary 2022-2023

Total Income	�123,140	Year end balance	�77,629
Total Expenditure	�45,511	Restricted funds	�6,532

Reserves Policy

At the current time, AHC UK does not have an operational Reserves Policy. This is something that the Trustees will be addressing across the next financial year.

Other Assets

As a charity, we do not hold any other assets.

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Alternating Hemiplegia of Trustees Annual Report Childhood UK 2022-2023

Charity Number: 1192701

Objectives and Activities: 2022 -2023

Month	Activities	Objectives1
April	�� � �� � �� � ��	A,B,C,D,E
May	�� � �� � �� � ��	A,B,C,D,E
June	�� �� �� �� � �� � ��	A,B,C,D,E
July	�� �� � �� � ��	A,B,C,D,E
August	�� � �� � �� ��	A,B,C,D,E
September	�� � �� �� ��	A,B,C,D,E
October	�� � �� � �� � ��	A,B,C,D,E
November	�� � �� � ��	A,B,C,D,E

1 Objectives listed on page 2

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

December	�� � �� � ��	A,B,C,D,E
January	�� �� ��	A,B,C,D,E
February	�� �� ��	A,B,C,D,E
March	�� �� �� ���� �� �� ��	A,B,C,D,E
April	�� �� ��	A,B,C,D,E

Achievements and Performance

Throughout the year, we have been planning, hosting and completing the work on the AHC and ATP1A3 10-year anniversary conference and 10[th] Symposium on ATP1A3 in disease. This met all of our charitable objectives: a, b, c, d and e.

This is referenced in the above table as the AHC 10-year event .

As a small charity, this has been the most significant piece of work we have undertaken this year (2022-2023)

Publications

In March 2023, the article “Rare. The Importance of research, analysis, reporting and education in ‘solving’ the genetic epilepsies: A perspective from the European patient advocacy group for EpiCARE” was published in European Journal of Medical Genetics , Volume 66(3). One of our AHC UK Trustees was part of the writing of this paper and involved in the editing of the final article.

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Alternating Hemiplegia of Trustees Annual Report Childhood UK 2022-2023

Charity Number: 1192701

International Work

AHC UK rep is a member of AHCFE

AHC UK rep is a member of AHC International Alliance (AHCIA)

All of the above work represents objectives: a, e

UK Work

AHC UK rep attended Scottish Parliament Cross Party Working Group meetings on Rare Diseases � 2022/2023

All of the above work represents objectives: a, b, c,

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 in October 2022. There are ongoing pieces of work associated with this including research publications.

Continued to support families online

Promotion of the Sleep Questionnaire for AHC UK Researchers

Promoted involvement in research for a Natural History Study in UK and Ireland (children and adults)

All of the above work represents objectives: a, b, c, d, e

Online and IT Performance

AHC YouTube space - Interviews with researchers for families, clinicians and other researchers

� Updated the website ongoing work. Including blogs.

Emails/Newsletters

Activity on social media platforms

Closed groups on social media for supporting families

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

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 and Grant reports.

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.

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

Review and Sign Off

The above report has been reviewed and approved by the Charity Trustees.

Lyndsey Chand (AHC UK) (Feb 29, 2024, Katherine Behl (AHC UK) (Feb 29, 2024, 5:47pm) 3:21pm)

Johanna Brown (AHC UK) (Feb 29, 2024, 6:04pm)

Katherine Behl Lyndsey Chand Jo Brown Acting Chair Secretary Treasurer And Vice Chair 29/02/2024 29/02/2024 29/02/2024

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	Charity Name Alternating Hemiplegia of Childhood UK	Charity Name Alternating Hemiplegia of Childhood UK	Charity Name Alternating Hemiplegia of Childhood UK	No (if any) 1192701	CC16a
	For the period from	Period start date 06/04/2022	To	Period end date 30/04/2023

Section A Receipts and payments
A1 Receipts	Unrestricted funds to the nearest £ 70,876 - 89 250 - - - 71,215 - - - 71,215 - - - - 50 - - 68 - - - - - - 118 - - - 118 71,097 - - 71,097	Restricted funds to the nearest £ - 42,641 9,284 - - - - - 51,925 - - - 51,925 38,112 1,395 820 67 - 4,202 622 175 - - - - - - 45,393 - - - 45,393 6,532 - - 6,532	Endowment funds to the nearest £ - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -	Total funds to the nearest £ 70,876 42,641 9,284 89 250 - - - 123,140 - - - 123,140 38,112 1,395 820 67 50 4,202 622 243 - - - - - - 45,511 - - - 45,511 77,629	Last year to the nearest £
Donations	70,876				-
Grants					-
Event income	-				-
Interest	89				-
Fundraising	250				-
	-				-
	-				-
	-				-
*Sub total*(Gross income for AR)	71,215				-

A2 Asset and investment sales, (see table).
	-
	-				-
*Sub total*	-				-
*Total receipts* A3 Payments
					-

Direct conference costs	-				-
Grantspaid in relation to conference	-				-
Printing	-				-
Foreign charges	-				-
Professional fees	50				-
Travel costs	-				-
Insurance	-				-
Bank fees	68				-
	-				-
	-				-
	-
	-				-
	-				-
	-				-
**Sub total **	118				-

A4 Asset and investment purchases, (see table)
	-
	-
**Sub total **	-				-
*Total payments* *Net of receipts/(payments)* A5 Transfers between funds A6 Cash funds last year end *Cash funds this year end*
					-

	71,097	6,532	-	77,629	-
	-	-	-	-	-
	-	-	-	-	-
	71,097	6,532	-	77,629	-

141

CCXX R1 accounts (SS)

29/02/2024

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

Details Details *Total cash funds* (agree balances with receipts and payments account(s)) Accrued income Bank balance Details Details Accountancy fee Details Refunds in relation to conference costs Grant income to be repaid to funders	Unrestricted funds to nearest £ 71,097 - 71,097 OK Unrestricted funds to nearest £ - - - - - - Fund to which asset belongs Fund to which asset belongs Fund to which liability relates Restricted Restricted Unrestricted	Restricted funds to nearest £ 6,532 - 6,532	Endowment funds to nearest £
		6,532	-
			-
		-	-
		6,532	-
		OK	OK
		Restricted funds to nearest £ 4,985 - - - - - Cost (optional) - - - - - Cost (optional) - - - - - Amount due (optional) 4,963 10,801 1,920 - -	Endowment funds to nearest £
			-
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			When due (optional)
Refunds in relation to conference costs	Restricted	4,963
Grant income to be repaid to funders	Restricted	10,801
Accountancy fee	Unrestricted	1,920
		-
		-

Trustee expenses

During the period ended 30 April 2023, expenses totalling £2,521 were reimbursed directly to 2 Trustees (2022: £nil). All expenditure reimbursed was in relation to conference costs.

Signed by one or two trustees on behalf of all the trustees

		Signature	Print Name Katherine Behl Jo Brown LyndseyChand	Date of approval
			Katherine Behl	29 Feb 2024
			LyndseyChand	29 Feb 2024
			Jo Brown	29 Feb 2024

Johanna Brown (AHC UK) (Feb 29, 2024, 6:04pm) 152

CCXX R2 accounts (SS)

29/02/2024

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Alternating Hemiplegia of Trustees Annual Report Charity Number: 1192701 Childhood UK 2022-2023

Alternating Hemiplegia of Childhood UK (AHC UK)

� April 2022 April 2023

Charity Registration Number: 1192701

Current Trustees:

Previous Trustees:

AHC UK Mission statement:

No one, no family, shall ever be alone

AHC UK Charity Objectives

Structure, Governance and Management

Functions and duties of charity trustees

Eligibility for trusteeship

Number of charity trustees

First charity trustees

Appointment of further charity trustees

Retirement and removal of charity trustees

Taking of decisions by charity trustees

Delegation by charity trustees

Financial Review

Report Year ending April 2023

Financial Summary 2022-2023

Reserves Policy

Other Assets

Objectives and Activities: 2022 -2023

Achievements and Performance

Publications

International Work

UK Work

AHC UK Charity Performance

Online and IT Performance

Future:

Public Benefit

Benefit

Public Benefit

Review and Sign Off

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

Trustee expenses

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