2025-03-31-accounts - Gri-Uk

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Trustees' Annual Report					for theperiod
From	Period start date			To	Period end date
	19	April	2024		31	03	2025

Section A Reference and administration details

Charity name GRI-UK

Other names charity is known by

Registered charity number (if any) 1207930

Charity's principal address Durham House, 10 Pony Chase

Cobham Surrey Postcode KT11 2PF

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 (if any)
Alison Koopman	Chair of Board of Trustees	19.4.24	GRI-UK Board of Trustees
Toni Clarke	Deputy Chair of Board of Trustees	19.4.24	GRI-UK Board of Trustees
Kristina McKean	Treasurer	19.4.24	GRI-UK Board of Trustees
Sue Banks	Secretary	19.4.24	GRI-UK Board of Trustees
Jillian Hasting Ward	Research Lead	19.4.24	GRI-UK Board of Trustees
Shilpa Kaluti	Trustee	19.4.24	GRI-UK Board of Trustees
Colette Dufficey	Trustee	12.3.25	GRI-UK Board of Trustees

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

Name Dates acted if not for whole year

Names and addresses of advisers (Optional information)

Type of adviser Name Address

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) How the charity is constituted

Charitable Incorporated Organisation

(eg. trust, association, company)

Trustee selection methods

Elected by trustee majority

(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.

GRI-UK works independently buts is part of several rare disease networks and partners who we would closely with. These are namely:

The Genetic Alliance
Global genes
UK Rare Epilepsies Together
The European GRI Alliance led by GRIN Europe
We have developed and finalised the following policies and procedures: • Grant giving policy

We are in the process of finalising the following policies and procedures:

Finance policy
Privacy policy
Social media policy
Fundraising policy

Our trustees have attended a number of training opportunities provided by BEACON for Rare Diseases, which have included:

Financial management for charities
Fundraising
Strategy
Genomic research

We are working closely with other GRI organisations around the world including Cure GRIN and GRIN Europe. We are also developing working relationships with scientists and GRI Researchers across the UK including in University College London, Oxford University and Edinburgh University.

In our first year the major risks we have identified are

Securing sustainable funding from a variety of income sources so in the future we are not building a funding model reliant on our small community of the families of GRI patients in the UK.
Building a community of families affected by GRI conditions across the UK who want to participate in our activities.
As entirely volunteer trustees who implement every aspect of the charity - the time commitment needed to build an active and impactful organisation versus the time commitment trustees actually have given their main work and family and caring commitments.

Section C Objectives and activities

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

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)

GRI-UK’s objectives as set out in our CIO are: 1. Aiming to advance cures and treatments of GRI disorders 2. Supporting families so that those diagnosed with these disorders can lead the best life possible. 3. Raising awareness, including within the UK Health Service, and medical centres of the symptoms, needs and medical conditions of those living with GRI disorders to help enable better and faster access to diagnosis and treatments. 4. Making the UK a centre of excellence for the public benefit of finding treatments and cures for GRI disorders. 5. Bringing together patients, parents, family members, medical professionals, researchers, scientists, pharmaceutical, bioscience and academic communities across the UK.

	GRI-UK has been busy in this first year of operation. Between team
	members we have attended several rare disease and genetic focused
	events to raise awareness of GRI gene disorders, the profile of GRI-UK
	and understand the landscape of rare disease support and research and
	how best we can develop as a charity to meet our aims. These have
	included:
	• Beacon Patient Group Mentoring Programme 2024-25
	• Beacon Cambridge Rare Disease Showcase 2024
	• Beacon: The fundamentals of fundraising without a fundraiser
	webinar.
	• Beacon: New Models of Drug Development meeting.
	• Beacon: Empowering patient groups in rare disease research
	funding webinar.
	• Beacon: Unlocking research opportunities: Partnering with
	academics’ webinar.
	• A speaking session at the 2024 GenPAN conference (A sub-
	committee of the Association of Genetic Nurses and Counsellors).
	• The Festival of Genomics
	• EURORDIS Summer School on Rare Disease medicine
	development.
	Networks joined include the Genetic Alliance, UK RET (Rare Epilepsies Together) and Global Genes Alliance, attending Genetic Alliance Monthly Members Meetings and UK RET quarterly meetings.
	We have developed a ‘This is Me Rare Disease Passport’ for GRI patients in conjunction with CAMRare, which is available for all patients
	affected by GRI gene disorders.
	Through public social media, email and family connect sessions we have
	promoted opportunities to participate in GRI research amongst our
	community including GRIN Patient Registries, GRIA patient registries,
	The GRI faces project.
	We have registered as a patient group with NICE (National Institute for
	health and Care Excellence) to help facilitate our involvement in the drug
	licencing process in coming years and advocate for the best possible
	treatments to reach patients through the NHS.
	We have collaborated with other GRI organisations across the globe to
	strengthen the position of patients in the UK to understand and
	participate in GRI research and benefit from treatments for GRI
	symptoms.
	• Bi-monthly meetings with counterparts in USA,
	• We partneredwithCure GRINonpromotingthe GlobalGRI

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Census.

Attending the GRIN Europe Conference in Barcelona (funded independently of the charity). Presenting a poster on our community and work. We fed back to families in the UK on the different sessions and presentations at the conference through a family connect zoom meeting.
Feeding into the Epicare Leaflets for GRIN patients (arranged through GRIN Europe).
Joined and attended meetings of the Informal European GRI Alliance – which brings together patient originations across Europe to network and build areas of work together.

By the end of the reporting year, we have held 10 trustee meetings covering regular updates on all aspects of the charities function and growth.

We have developed a website for families affected by GRI conditions, clinicians, researchers, and the general public, which launched In October 2024 and holds a wealth of information in GRI disorders and their treatment.

We have grown a stronger online presence and social media following. Over the course of the year through Facebook we had 246 net follows, bringing our total number of followers to 417, with 2,905 interactions, 260 comments and 303 shares.

We have identified and registered 60 families over the course of the reporting year who represent 65 patients with GRIN and GRIA disorders. Over the year we developed onboarding procedures for families so that they receive relevant and available information on GRI disorders and a welcome to the organisation.

We have supported the first ever clinical trial specifically for GRI patients, by meeting with GRIN Therapeutics in London and Glasgow to visit the sties and discuss the roll out of Radiprodil Clinical Trials across the 2 sites. We have continued to support this work throughout the year.

We have updated families and supporters through different forms of communication including primarily through social media but also a Newsletter which was sent to all our families and others on Rare Disease Day.

We initiated Family Connect Sessions, which are promoted publicly and amongst families – a monthly drop-in online meeting held with parents/caregivers caring for children and adults affected by GRI conditions. We held 3 ‘Family Connect’ Meetings across the end part of the year. One on the Barcelona GRIN Europe Conference one with Dr. Al Freedman psychologist, who talked about mental health of rare disease patients, families and Communities. One was an informal general ‘getting to know you’ session.

We have supported 3 individual families find further information on their genetic variant, or access research clinicians to improve health outcomes for their children.

March 2025 was GRI Awareness Month and Light up for GRI, and we were active in promoting a lot of social media content and information

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about GRI Disorders.

We have also started the process of planning a number of activities in future reporting periods including:

Two face to face meetups with GRI families across the UK in September and October 2025.
- Drafting and developing the GRI-UK Family Survey – which aims to give us a broader understanding of our community across the UK.
- The GRI Conference for families and other scientists in May 2026 jointly with researchers in Edinburgh University.
- Drafting and finalising policy and procedures across a range off issues.

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;

Our polices are still in draft stages of development. The involvement of volunteers beyond the Board of Trustees - which is entirely voluntary and currently only made up of family members with children or grandchildren affected by GRI disorders – has been absent in the reporting period. We plan that in 25/26, we will have these elements further developed.

contribution made by volunteers.

Section D Achievements and performance

We have started regular dialogue with our community and now 60
Summary of the main families affected by GRI conditions have been identified and
achievements of the charity registered with the charity.
during the year • A total of £37,965.58 has been raised by the charity. This has set us up well to be able to fund our first piece of research in 2025 as we plan towards our first family scientific conference in 2026.
• The relationships we have built have given us a strong foundation in the GRI community, GRI research field and the UK genomics arena to be able to grow in 2025/2026 and raise further funding for projects which support families and seek to find treatments and cures for GRI disorders.
• We launched the wwww.gri-uk.org website. • We have grown a stronger online presence and social media following.

Section E Financial review

The Board are aware of their responsibilities surrounding the going Brief statement of the concern status of The Charity and will monitor this on a regular basis. charity’s policy on reserves The reserves policy of The Charity is reserves policy aims to retain reserves equivalent to 2 months unrestricted operating costs in order to offset costs that would be incurred if it was necessary to wind The Charity. These costs at all times are to be held in general unrestricted funds. Details of any funds materially N/A in deficit

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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;

Our principal sources of funds are from community level fundraising efforts amongst families who are affected by GRI disorders.

Expenditures have been limited in this operating year as the entire team in voluntary, and the activities we done have been focused on setting up the charity and identifying and getting to know families. Any expenditure we have had has been used operationally to facilitate the website set up or elements of banking to facilitate online donations.

We don’t have an investment policy and have no plans to invest in coming years.

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) Full name(s) Alyson Koopman Position (eg Secretary, Chair, Chair of the Board of Trustees etc)

KM Kristina McKean Treasurer and Trustee

Date 1.10.2026

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