2024-05-31-accounts - Champ1 UK

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

Trustees' Annual Report for the period

Period start date Period end date 29 09 2023 31 05 2024

From To

Section A Reference and administration details

Charity name Other names charity is known by Registered charity number (if any) 1204985

CHAMP1 UK

Charity's principal address CHAMP1 UK, 77 Hardy Crescent

Wimborne Dorset Postcode BH212AR

Names of the charity trustees who manage the charity

Trustee name	Office (if any)	Dates acted if not for whole year	Name of person (or body) entitled to appoint trustee (ifany)
Scott Robin Hutchings
Sarah Ruth Hutchings
JeffreyDean D’Angelo
Lorna Rose Blacklidge		12/03/2024 onwards

Names of the trustees for the charity, if any, (for example, any custodian trustees)

Name Dates acted if not for whole year

TAR

March 2012

Names and addresses of advisers (Optional information) Type of adviser Name Address	Names and addresses of advisers (Optional information) Type of adviser Name Address	Names and addresses of advisers (Optional information) Type of adviser Name Address




Name of chief executive or names of senior staff members (Optional information)

Section B Structure, governance and management

Description of the charity’s trusts

Constitution

Type of governing document (eg. trust deed, constitution) CIO - FOUNDATION How the charity is constituted (eg. trust, association, company) Elected by board members Trustee selection methods

(eg. appointed by, elected by)

Additional governance issues (Optional information)

You may choose to include additional information, where relevant, about:

policies and procedures adopted for the induction and training of trustees;
the charity’s organisational structure and any wider network with which the charity works;
relationship with any related parties;
trustees’ consideration of major risks and the system and procedures to manage them.

Section C Objectives and activities

Summary of the objects of the charity set out in its governing document

The improvement of the lives of those affected by CHAMP1 disorders. To advance clinical research, effective treatment and early detection. To increase public awareness. To provide family support and patient advocacy.

TAR

March 2012

In accordance with its charitable objectives, CHAMP1 UK has continued to support individuals and families affected by CHAMP1-related disorders by providing information, advocacy, and a supportive community. The charity has worked to raise awareness among medical professionals, researchers, and the wider public to improve diagnosis, treatment, and understanding of this rare genetic condition. Over the past year, CHAMP1 UK has undertaken the following key activities for public benefit:

Summary of the main activities undertaken for the public benefit in relation to these objects (include within this section the statutory declaration that trustees have had regard to the guidance issued by the Charity Commission on public benefit)

Support and Community Building : Facilitating connections between families through online forums, support groups, and events, ensuring that those affected by CHAMP1 do not face their journey alone.
Raising Awareness : Engaging in awareness campaigns, and participating in medical conferences, and genetic events.
Research and Advocacy : Exploring opportunities for scientific research into CHAMP1, advocating for greater understanding of the condition, and working with researchers to advance potential treatments.
Educational Resources : Developing and distributing materials for families, caregivers, and professionals.
Fundraising Initiatives : Organising events and campaigns to secure funding for research, support services, and awareness programmes.

The trustees confirm that they have had due regard to the Charity Commission’s guidance on public benefit when reviewing the charity’s aims and objectives and in planning its activities. Every initiative undertaken by CHAMP1 UK has been designed to provide direct and meaningful benefits to those affected by CHAMP1 and to contribute to the wider understanding of the rare genetic disorder.

Additional details of objectives and activities (Optional information)

You may choose to include further statements, where relevant, about:

policy on grantmaking;
policy programme related investment;
contribution made by volunteers.

TAR

March 2012

Section D Achievements and performance

As CHAMP1 UK’s founding year, it has been a pivotal period of growth, Summary of the main community building, and awareness-raising. The charity has made achievements of the charity significant progress in supporting families, increasing awareness of during the year CHAMP1, engaging with the medical community, and laying the groundwork for future expansion. Support & Community CHAMP1 UK has successfully arranged several family meet-ups throughout the year, providing vital opportunities for connection and shared experiences among families affected by CHAMP1. Additionally, the charity played a key role in organising the global CHAMP1 conference in Orlando, bringing together experts, researchers, and families to advance understanding of the condition. The charity has continued to expand its online presence, ensuring that newly diagnosed families can easily access support and guidance. A number of new families have reached out this year, and CHAMP1 UK has provided them with crucial support during their life-changing diagnosis. Awareness & Advocacy CHAMP1 UK has led impactful awareness campaigns, particularly for CHAMP1 Awareness Day. The charity successfully arranged for UK landmarks to be illuminated in purple and secured coverage in newspapers and on BBC radio, increasing public knowledge of the condition. Through engagement with local newspapers, magazines, and radio stations, CHAMP1 UK has amplified its reach and provided a platform for families to share their experiences. The charity has also collaborated with key organisations, including the CHAMP1 Research Foundation and CHAMP1 Research Foundation - EU, strengthening international advocacy efforts. Research & Medical Engagement While CHAMP1 UK has not directly funded research projects this year, it has played an essential role in facilitating family participation in research studies. The charity has actively reached out to researchers and universities, ensuring that CHAMP1 is included in new scientific studies to expand knowledge of the condition. Work is also ongoing to improve and create CHAMP1-related educational materials and medical resources. Educational Resources & Outreach The charity has developed new materials, including website content and promotional resources, to educate families, professionals, and the wider public about CHAMP1. Participation in conferences, training courses, and events has further solidified CHAMP1 UK’s role as an advocate for those affected by the condition. Additionally, the charity has begun engaging with local schools to raise awareness and provide relevant information, ensuring that children with CHAMP1 receive better-informed support within educational settings. Fundraising & Financial Growth As its first year as a registered charity, CHAMP1 UK has successfully raised over £2,500 through various fundraising initiatives, including raffles and a plane pull event. This achievement lays a strong foundation for future financial growth, although securing grants, sponsorships, and corporate partnerships remains an area for future development. Impact & Growth Since its inception, CHAMP1 UK has grown significantly, establishing itself as a key resource for families affected by CHAMP1 in the UK. One new family shared a powerful testimonial: "You've made me feel better about this CHAMP1 diagnosis in 20 minutes than all the doctors have in the last two months."

TAR

March 2012

Section D Achievements and erformance p

While this year has been focused on building a strong foundation, the progress made in community support, awareness, and research engagement has set the stage for continued impact and expansion in the years to come.

TAR

March 2012

Section E Financial review

CHAMP1 UK aims to maintain a level of reserves that ensures financial Brief statement of the stability and allows the charity to continue its work in supporting families, charity’s policy on reserves raising awareness, and facilitating research. As this is our founding year, our current focus is on building sustainable income streams to support future activities.

The trustees will regularly review the reserves policy to ensure that funds are managed responsibly and in line with the charity’s objectives, with the aim of establishing a designated reserve fund to cover operational costs and unforeseen expenses.

Details of any funds materially in deficit

N/A

Further financial review details (Optional information)

You may choose to include additional information, where relevant about:

the charity’s principal sources of funds (including any fundraising);
how expenditure has supported the key objectives of the charity;
investment policy and objectives including any ethical investment policy adopted.

Section F Other optional information

Section G Declaration

The trustees declare that they have approved the trustees’ report above.

Signed on behalf of the charity’s trustees

Signature(s) Sarah Ruth Hutchings Full name(s) Scott Robin Hutchings Position (eg Secretary, Chair, Chair Board member etc) Date 06/03/2025

TAR

March 2012

Charity Name		No (if any)
CHAMP1 UK		1204985
Receipts andpayments accounts			CC16a
For the period from	29/09/2023 Period start date	31/05/2024 Period end date To

Section A Receipts and payments	Section A Receipts and payments
A1 Receipts	Unrestricted funds to the nearest £	Restricted funds to the nearest £	Endowment funds to the nearest £	Total funds to the nearest £ 2,134 484 - - - - - - 2,618 - - - 2,618 300 353 382 - - - - - - 1,034 1,343 - 1,343 2,377 241	Last year to the nearest £
Donations and legacies	£2,134	-	-	2,134	-
Other tradingactivities	£484 - - - - - - 2,618 - - - 2,618 300 353 382 - - - - - - 1,034 1,343 - 1,343 2,377 241 - 376 617	-	-	484	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
	-	-	-	-	-
*Sub total*(Gross income for AR)	2,618	-	-	2,618	-

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

GeneratingFunds	300				-
Charitable Activities	353				-
Support Costs	382				-
	-				-
	-				-
	-				-
	-				-
	-				-
	-				-
**Sub total **	1,034				-

A4 Asset and investment purchases, (see table)
Purchase of Assets	1,343
	-
**Sub total **	1,343				-
*Total payments* *Net of receipts/(payments)* A5 Transfers between funds A6 Cash funds last year end *Cash funds this year end*
					-

	241	-		241	-
	-	-		-	-
	376	-		376	-
	617	-		617	-

CCXX R1 accounts (SS)

06/03/2025

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 B1 Cash funds B2 Other monetary assets B4 Assets retained for the charity’s own use B5 Liabilities B3 Investment assets	Signature Details Details Computers & other IT equipment Gazebo & event material Branded clothing Promitional Material General Funds Details Details *Total cash funds* (agree balances with receipts and payments account(s)) Details	Unrestricted funds Restricted funds to nearest £ to nearest £ 617 - - - - - 617 - 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 Scott Hutchings Sarah Hutchings	Endowment funds to nearest £
			-
			-
			-
			-
			OK
			Endowment funds to nearest £
			-
			-
			-
			-
			-
			-
			Current value (optional)
			-
			-
			-
			-
			-
			Current value (optional)
			600
			300
			100
			100
			-
			-
			-
			-
			-
			When due (optional)






			Date of approval
		Scott Hutchings	06/03/2025
		Sarah Hutchings	06/03/2025

CCXX R2 accounts (SS)

06/03/2025