## **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||
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**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**
1
|**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**|
|---|---|---|
||||
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|**Name of chief executive or names of senior staff members (Optional information)**|||
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## **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**
2
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**
3
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**
4
## 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**
5
## **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**
6
|**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
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
**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
2