**Trustees’ Annual Report for the period 29[th] September 2024 to 31[st] May 2025**
## **Charity name: The MVA Society Charity registration number: 1210996**
## **Objectives and Activities**
|**Objectives and Activities**|||
|---|---|---|
||||
|Summary of the purposes of the
charity as set out in its governing
document|**To find a treatment for Mosaic Variegated Aneuploidy**
**(MVA) Syndrome.**
**To support this, we are building an MVA community –**
**patients, families, clinicians, researchers. This is**
**enabling us to grow an international network of MVA**
**champions across the globe.**
**In turn, this helps advance the education and**
**awareness of MVA in the wider public too.**||
|Summary of the main activities in
relation to those purposes for the
public benefit, in particular, the
activities, projects or services
identified in the accounts.|**The charity aims to benefit the public by providing a**
**source of information and support for families**
**effected by MVA syndrome.**
**Due to the rare nature of the medical condition**
**(1:10,000,000), dedicated, aligned, medical support is**
**not readily available via the NHS or private health**
**care. We are bringing together experts from around**
**the globe to help piece together a more bespoke**
**surveillance regime and begin (through research) to**
**find a treatment for this ultra rare condition.**
**The charity’s aim is to fund research to create**
**treatment options for patients with MVA.**||
|Statement confirming whether the
trustees have had regard to the
guidance issued by the Charity
Commission on public benefit|**The trustees are aware the guidance issued by the**
**Charity Commission on public benefit.**||
||||
|Contribution made by volunteers||**The MVA volunteers are in fact the Board of**
**Trustees. There are 8 Trustees in total. Their**
**contribution consists of attending the monthly**
**Trustee meetings plus ad-hoc projects that come up**
**that fall under their area of expertise.**|
## **Achievements and Performance**
|Achievements against
objectives set|**The MVA Society was started in Nov 2024. The main**
**achievements have been:**
-
**Recruited a highly experienced Board of Trustees –**
**this is from the medical world (geneticists and**
**clinicians) and from the commercial pharma world.**
-
**Ran an ‘expert’ MDT workshop (multi-disciplined**
**team) representing the main specialisms relating to**
**MVA. This gave us a clear pathway for a feasible**
**research strategy.**
-
**Held monthly Trustee meetings. This has given**
**momentum to getting plans in place and up and**
**running to progress the aims of the Chairty.**
-
**Produced a highly professional 15 minute**
**documentary film on MVA. The first ever on MVA.**
-
**Established the first ever dedicated MVA website in**
**the world. This acts as a focal point for the MVA**
**community (patients, families, clinicians,**
**researchers).**
-
**Established MVA specific patient information (on the**
**website). These are the only MVA specific patient**
**leaflets, videos, fact sheets available anywhere in the**
**world.**
-
**Had a team of 3 run the London Marathon for the MVA**
**Society, raising £10k in the process.**
-
**Started 3 ‘mini’ research programs in Spain, USA and**
**UK – all of which should produce preliminary data to**
**link into our main research program (2026).**
-
**Commissioned an in-depth report on MVA by the**
**Cambridge Consultancy Network (CCN).**|
|---|---|
|Performance of fundraising activities
against objectives set|**During the short period to 31st May 2025, the trustees**
**have been busy working on the 4 goals of the Charity:**
**1. Developing patient information and ensuring its**
**accessible via the website**
**(www.mvasociety.org).**
**This is the first website in the world dedicated**
**to MVA. Its aim is to be the focal point for**
**patients, families and clinicians/researchers for**
**all MVA related matters & information.**
**We have already developed specific MVA**
**patient / family information – fact sheets,**
**video’s and on-line chat/advice forum.**
**2. Growing awareness of the condition and**
**beginning to build a community of**
**patients/families, clinicians, researchers.**
**We have ensured MVA is now represented with**
**all major rare disease ‘umbrella’ organisations**
**eg NORD. Additionally, we have established an**
**MVA point of contact in 12 countries around the**
**globe (in 5 continents). This global reach is**
**both very necessary (due to the rareness of the**
**condition) and is also growing as we find more**
**centres/physicians with experience of it.**
**This allows all/any MVA patients, families,**
**clinicians or researchers to get direct access to**
**first hand insights and information relating to**
**MVA.**
**We are also finalising a ~15 minute**
**documentary film on MVA. This will be posted**
**on the website as well as being sent across our**
**global MVA network and to the rare disease**
**umbrella organisations.**
**3. Developing and operationalising a research**
**plan!**
**We have already held an ‘expert’ MDT (multi-**
**disciplined team) workshop on MVA. This**
**allowed experts across the different**
**specialisms that relate to MVA, to put their**
**viewpoints forward on ‘the art of the possible’**
**from a research perspective. This resulted in**
**clear-cut plan to begin our research – which is**
**dependent upon several factors, namely taking**
**skin biopsy’s and growing fibroblasts in a lab,**
**raising £250k to fund a researcher, and**
**identifying and recruiting a post-doc researcher**
**to carry out the work. This should all be in**
**place by the end of 2025 – meaning the**
**research can start in 2026.**
**Concurrently, we have been fortunate enough**
**to start 3 other mini-research projects (one in**
**London, one in Spain and one in the USA).**|
|---|---|
||**These should produce preliminary data to**
**support the main research project in due**
**course.**
**In addition to that, we have had an independent**
**report from the University of Alabama on MVA**
**and treatment options. And by the end of July**
**we will have the results of a global hackathon**
**to look at likely medication options that will**
**have a positive effect on MVA.**
**4. Fundraising**
**Our year 1 goal is to raise £250k to support the**
**hiring and recruitment of a post-doc PhD**
**student to start our research project. So far, we**
**have achieved ~£90k, but have a clear plan to**
**reach to the £250k mark by the end of the year.**
**The main activities linked to fundraising so far**
**have been running the London Marathon –**
**raising ~£10k, attracting philanthropic**
**donations from companies and individuals**
**(~£75k)**
**Further fundraising event are planned for 2025,**
**including a Kayleigh in Scotland, a golf**
**tournament and a 1st Anniversary Gala Dinner**
**in London.**
**With these planned events and the**
**philanthropic promises/assurances we have,**
**we are on track to hit our Year 1 target of £250k.**
**Fundraising activities have progressed well.**
**Our activities have been – and are planned to**
**be – in 3 broad areas:**
-
**Philanthropic donations from**
**individuals. We have raised £35k via**
**this channel**
-
**Corporate donations from pharma / related**
**companies. We have raised £40k via this**
**channel. However, this is a channel that we are**
**aiming to raise a lot more money from in the**
**months to come.**
-
**Fundraising events. We have completed**
**1 main fundraising event, namely the**
**London Marathon. 3 of us ran for the**
**MVA Society and we raised £10k in the**
**process. We have 3 more fundraisers**
**planned for 2025, namely**
•
**A golf tournament in**
**September**
•
**A Kayleigh in September (in**
**Scotland)**
•
**A 1st Year Anniversary Gala**
**dinner in November.**
**We are currently on track to hit our 1st year**
**target of £250k**|
|---|---|
## **Financial Review**
|**Financial Review**||
|---|---|
|Review of the charity’s financial
position at the end of the period|**During the period, £89,402 was raised from donations**
**and events. Net inflow for the period was £87,642.**
**The amount of cash funds as at 31st May 2025 were**
**£87,642**|
|Statement explaining the policy for
holding reserves stating why they are
held|**The cash reserves are held to initially fund**
**fundraising activities. It is estimated that a minimum**
**of £250,000 will need to be held before funding of**
**meaning full research into MVA Syndrome can**
**commence.**|
|Amount of reserves held|**£87,642 of cash reserves were held as at 31st May**
**2025**|
||**The MVA Society’s principal sources of funds so far**
**have been:**
-
**Donations from companies**
-
**Donations from individuals**
-
**Fund raising events eg the London Marathon**
**The MVA Society has completed a risk assessment**
**and risk register. The top 6 risks identified are:**
**1. Funding (as low patient numbers)**
**2. Lack of interest, attention and exposure due**
**to lack of awareness of this condition**
**3. GDPR (handling patient data)**
**4. Sufficient resource to achieve our aims**
**5. Relying on goodwill (Trustees and wider**
**community)**
**6. Finding patients**|
|The charity’s principal sources of
funds (including any fundraising)|**The MVA Society’s principal sources of funds so far**
**have been:**
-
**Donations from companies**
-
**Donations from individuals**
-
**Fund raising events eg the London Marathon**|
|A description of the principal risks
facing the charity|**The MVA Society has completed a risk assessment**
**and risk register. The top 6 risks identified are:**
**1. Funding (as low patient numbers)**
**2. Lack of interest, attention and exposure due**
**to lack of awareness of this condition**
**3. GDPR (handling patient data)**
**4. Sufficient resource to achieve our aims**
**5. Relying on goodwill (Trustees and wider**
**community)**
**6. Finding patients**|
## **Structure, Governance and Management**
|Type of governing document|**The Charities governing instrument is a constitution**
**document dated 29th September 2024**|
|---|---|
|How is the charity constituted?|**The Charity is a Charitable Incorporated Organisation**
**(CIO)**|
|Trustee selection methods including
details of any constitutional provisions
e.g. election to post or name of any
person or body entitled to appoint one
or more trustees|**There must always be a minimum of three trustees.**
**The number of trustees can not exceed twelve. The**
**period of appointment of the initial trustees is set out**
**in the constitution document. Any further appoints**
**must be for a term of three years by a resolution**
**properly convened.**
**In selecting individuals for appointment, the trustees**
**must have regard for the skills, knowledge and**
**experience needed for the effective administration of**
**the CIO.**|
|||
|Policies and procedures adopted for
the induction and training of trustees|**All Trustees have been introduced to the on-line**
**training resources available on the Charities**
**Commission website.**
**Governance policies have been written and shared to**
**protect against the current identified areas of**
**concern.**|
|The charity’s organisational structure
and any wider network with which the
charity works|**The organisational structure is very simple. We have**
**8 x Trustees, which includes 1 x Chairman (&**
**Founder). The list is below**
-
**Chairman & Founder – Jonathan Bracey**
-
**Trustees – Prof Anil Dhawan, Dr Sharon**
**Jheeta, Prof Harry Leitch, Dr Ellie Seaby, Rob**
**Keel, Scott Healy, Kate Diston-Hunter.**|
## **Administrative Details**
|Charity name|The MVA Society|
|---|---|
|Registered charity number|1210966|
|Charity’s principal address|50 Cumberland Terrace
London
NW1 4HJ|
## **Board of Trustees**
Mr Jonathan Edward Bracey (Chairman) Mrs Kathryn Louise Diston-Hunter Mr Robert Philip Keel Professor Anil Dhavan Mrs Sharon Kaur Jheeta Mr Scott William Healy Professor Harry Leitch Dr Eleanor Seaby
## **Declarations**
**Signature Full name** Mr Jonathan Edward Bracey **Position** Chairman **Date** 1st July 2025
**The MVA Society**
**CC16a**
**Reg No.1210996**
## **Receipts and payments accounts**
**For the period 29/09/2024 31/05/2025 To from**
## **Section A Receipts and payments**
|**A1 Receipts**|**Unrestricted**
**funds**
**to the nearest**
**£**
**79,855**
**9,547**
**89,402**
**89,402**|**Unrestricted**
**funds**
**to the nearest**
**£**
**79,855**
**9,547**
**89,402**
**89,402**|**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**|**Restricted**
**funds**
**to the nearest £**
**-**
**-**
**-**
**-**|**Endowment**
**funds**
**to the nearest £**
**-**
**-**
**-**|**Total funds**
**to the nearest £**
**79,855**
**9,547**
**89,402**
**89,402**|**Total funds**
**to the nearest £**
**79,855**
**9,547**
**89,402**
**89,402**|**Last year**
**to the nearest £**|
|---|---|---|---|---|---|---|---|---|
|Donations|**79,855**|||||**79,855**||**-**|
|Events|**9,547**|||||**9,547**||**-**|
|**_Sub total_**_(Gross income for_
_AR)_
**_Total receipts_**
**A3 Payments**|**89,402**|||||**89,402**||**-**|
||||||||||
||||||**-**|**89,402**||**-**|
||||||||||
|Fundraisingexpenses|**1,760**||**-**||**-**|**1,760**||**-**|
|**_Sub total_ **
**_Total payments_**
**_Net of receipts/(payments)_**
**A6 Cash funds last year end**
**_Cash funds this year end_**|**1,760**||**-**||**-**|**1,760**||**-**|
||||||||||
||||||**-**|**1,760**||**-**|
||||||||||
||**87,642**||||**-**|
**87,642**||**-**|
||**-**||||**-**|**-**||**-**|
||**87,642**||||**-**|**87,642**||**-**|
## **Section B Statement of assets and liabilities at the end of the period**
|**Categories**
**B1 Cash funds**|**Details**
**_Total cash funds_**
Signature|**Unrestricted**
**funds**
**to nearest £**|**Unrestricted**
**funds**
**to nearest £**|
|---|---|---|---|
|||**87,642**|**-**|
|||**87,642**|**-**|
|||**Mr Jonathan Bracey**||
CCXX R1 accounts (SS)
23/06/2025
1
## **Independent examiner's report on the accounts**
**Section A Independent Examiner’s Report**
**Report to the trustees** Charity Name The MVA Society **On accounts for the** 31[st] May 2025 **Charity no** 1210996 **period ended** I report to the trustees on my examination of the accounts of the above charity (“the Trust”) for the period ended **31/05/2025** . **Responsibilities and** As the charity's trustees, you are responsible for the preparation of the **basis of report** 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 examiner's statement** I have completed my examination. I confirm that no material matters have come to my attention in connection with the examination which gives me cause to believe that in, any material respect:
I have no concerns and have come across any 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.
**Signed: Date:** 01-07-2025 **Name:** Nilesh Patel FCCA Reg No: 1197617 **Relevant professional** ACCA **qualification(s) or body (if any): Address:** 18 Queen’s Walk London NW9 8ER
1
**Oct 2018**
**IER**