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← Alport UK

2024-08-01-accounts

ANNUAL REPORT AND ACCOUNTS

For the year ended 31 July 2024

Trustees' Annual Report for the period

Period start date Period start date Period end date Period end date
From 1 8 2023 To 31 7 2024

Section A Reference and administration details

Charity name alport uk

Other names charity is known by n/a

Registered charity number (if any) 1154774

Charity's principal address

PO Box 329 Cirencester Postcode GL7 9JA

Names of the charity trustees who manage the charity

1
2
3
4
5
6
7
8
9
10		 Trustee name Office (if any) Dates acted if not for whole
**year **		 Name of person (or body) entitled
to appoint trustee (ifany)
Colin Baigent Wholeyear
Julia Skelding 01 August 2023 – 21
May2024
Susie Gear Chief Executive Wholeyear
Frances Flinter Wholeyear
Rachel Lennon Wholeyear
Neil Turner Wholeyear
DannyGale Wholeyear
Tim McLean Wholeyear
Amanda McLean Wholeyear
Alice Turner Wholeyear

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

Name Dates acted if not for whole year
n/a

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Names and addresses of advisers (Optional information)

Type of adviser Name
Address		 Name
Address
Medical –
paediatric
nephrologist		 Professor Rachel
Lennon		 Royal Manchester Children's Hospital, Oxford
Road, Manchester M13 9WL
Medical – adult
nephrologist		 Professor Neil Turner University of Edinburgh Renal and Autoimmunity
Group, MRC Centre for Inflammation, Queen's Medical
Research Institute, Little France, Edinburgh, EH16 4TJ
Medical – adult
nephrologist		 Professor Daniel Gale Department of Renal Medicine, University College London
Geneticist Emeritus Professor
Frances Flinter		 Emeritus Professor of Clinical Genetics, Guy's & St
Thomas' NHS Foundation Trust
Genetics Department, 7th floor Borough Wing, Guy's
Hospital, Great Maze Pond, London SE1 9RT
Physiologist –
hearing		 Professor Dan Jagger University College London, UCL Ear Institute, 332 Gray's
Inn Rd, London, WC1X 8EE, United Kingdom
Eye specialist Dr Omar Mahroo St Thomas’ Hospital Campus, 3rd Floor South Wing Block
D, Westminster Bridge Road, London SE1 7EH
PR,
Communication
and Marketing		 Jane Keightley JK Branding and Communications Limited
Accountant David Cuthbertson Shilton Accounting Services Ltd
Name of chief
executive or names
of senior staff
members (Optional
information)
Susie Gear, Chief Executive

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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) Charitable Incorporated Organisation How the charity is constituted

Appointed for a term of 3 years by a resolution passed at a properly Trustee selection methods convened meeting of the Charity Trustees

(eg. appointed by, elected by)

Additional governance issues (Optional information)

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

Trustees’ consideration of the major risks & procedures to manage them: • Support – as we support patients and family members living with Alport Syndrome, there can be specific questions or situations that require medical advice or input. For the majority of questions, it is

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Section C Objectives and activities
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)
The objects of the CIO are the relief of sickness and the promotion of
health of those people suffering from Alport Syndrome, in particular, but
not exclusively by:
-
The establishment and facilitation ofa support networkfor Alport
Syndrome patients, carriers, their families and carers;
-
Theprovision of informationon Alport Syndrome;
-
Thesupport of researchinto Alport Syndrome both in the UK and
internationally;
-
Thesupport of a research registry in the UKand an international
alliance of national registries
Public benefit – statutory declaration by Trustees
The Trustees have paid due regard to the Charity Commission’s
guidance on public benefit in deciding what activities the charity should
undertake. alport uk recognises and welcomes the need to carry out its
charitable activities to the benefit of those affected by Alport Syndrome,
and retains this aim at the centre of its strategic planning.
alport uk is a patient-led organisationdedicated to facilitating a
support and information network for all those affected by Alport
Syndrome.
Alport Syndromeis an inherited condition that can cause kidney failure,
deafness and eye abnormalities. Those who inherit it will probably require
a kidney transplant when they are young adults. It can impact a large
number of people in a family. It is the second most common form of
inherited kidney disease. Meet Sam to understand the impact it has on
an individual:https://www.youtube.com/watch?v=fMrtfUV8GOI.
Our Visionis to ensure that all individuals and families with Alport
Syndrome feel empowered to enjoy the best quality of life.
Our Missionis to work in partnership with individuals, families and the
scientific community to:
• Facilitate asupportnetwork for patients and families
• Be a conduit for high quality, accessibleinformation
•Raise the profileof Alport Syndrome in the scientific
community
• Contribute to the internationalresearchagenda
•Collaborateon the development of a UK patient registry
and alliance of international patient registries.
alport UK fund four key areas of activity
1.Support– Provide support for UK patients and families through a
support network, website and information days.
2.Information– Work with clinicians, individuals and families to
educate them on more effective diagnosis and treatment, for example
national and international guidelines for diagnosis, treatment and the
best care for children, teenagers and adults.
3.Research– Work with other national patient organisations (eg USA,
across Europe and Asia) to:
a. Facilitate and drive the design, development and maintenance
of an international research strategyandplan for Alport

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Syndrome using a programme of international workshops – online and in-person.

The activities of alport uk are grounded in the local communities across the UK as we aim to connect up regional groups of individuals and families that are affected by Alport Syndrome. As a possible few thousand individuals impacted in the UK, it is a small population of those living with Alport Syndrome if looked at on their own. This requires alport uk to work internationally with other national patient organisations and clinicians to co-ordinate activities and research across a far bigger group of patients, particularly those with 100,000+ patients in countries such as China and USA.

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Additional details of objectives and activities (Optional information)

Contribution by volunteers

alport uk had two part-time employees over this period. The Chief Executive, leading the performance and achievements, is a volunteer. alport uk relied on voluntary help to run the activities over this period as for the previous nine years. With the growth of our community over Covid, we took steps to grow the number of volunteers in our team as we received more queries than we could respond to with the size of our team. Many volunteers come to us initially asking for support and then offer their many skills to help others as they see how they benefited.

Our community often reflect and remark on the journey we’ve been on and the remarkable progress alport uk makes and their ability to support patients and deliver professional international events that appeal to all stakeholders.

We are incredibly grateful to the many volunteers for this remarkable progress, especially for the many contributions from the following key and very motivated people:

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Grateful thanks to all those who raised money for us this year – every penny makes a difference. Particular thanks go to:

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Particular thanks go to Jamie Walker for organising a huge reeling party and raising the funds through tickets sales and by running reeling practices where they teach young adults to Scottish reel.

Some of the young people reeling in aid of alport uk, December 2023.

And those who generously provided alport uk with a grant:

And a number of people who wish to remain anonymous but to whom we are very grateful for their support and encouragement.

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We wish to thank our Scientific Advisory Committee for continuing to spend so much time this year advising and supporting support the community as the pandemic continued its hold whilst they were all also very busy on clinical wards helping with renal issues. They answered all queries within 24 hours, ensuring the community remained as calm as possible at such a worrying time for renal patients. We are so very grateful to the scientific community for their help to answer all questions and emails as and when they arose from patients or other scientists . Very many thanks to our UK Scientific Advisory Group:

Alport online workshops – Patients, patient families and clinicians continued to volunteer for alport uk. Thanks to Patrick Walker and Aura Zealey-Smith for their

Aura Zealey Smith moderating a workshop online

excellent moderation and broadcasting skills quizzing the scientists to make each production so much more engaging for the online audiences - see Alport Workshops on YouTube channel: https://tinyurl.com/y9cuhgby. Thanks also to Dan Long and Archie Walker for managing the productions behind the scenes, doing the rehearsals with scientific teams all over the world and training people up to deliver some outstanding workshops.

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Patrick Walker moderating an online workshop

Thank you to Patrick Walker for his excellent video-editing work that makes each Podcast so professional when loaded onto YouTube. We are so grateful for the ongoing inspiration from this group who help run the very professional Alport online workshops featuring the latest Alport research, using Zoom, which were provided for the international Alport community (patients and scientists) by alport uk and with set up costs kindly funded by Kidney Research UK. Volunteers who helped with the workshops, acting as moderators or contributors telling their stories also included Katie Brown, Sam Clarke, Dan Long, Patrick Walker, Heidi Zealey, Aura Zealey-Smith

We wish to thank those involved in growing Alport Avengers , an invaluable WhatsApp group specifically aimed at 18–35-year-olds, joining and sharing their experiences to help others. This included Katie Brown , Sam Clarke, Emmy Peters, Jamie Walker, Patrick Walker and Aura Zealey-Smith .

We are also very grateful to our colleagues who run the other national patient organisations and collaborate with alport uk, such as André Weinstock (Alport Syndrome Foundation, USA), Maria José Cacharron (Spain), Jessie Zhang and Mr Cai (China), Christof Finkler (Germany), Dave Blatt (Australia).

Huge thanks to the inspiration of many volunteers around the world – each Alport experts in both their scientific area and geography - that made up the Workshop Organising Committee for The 2024 International Workshop on Alport Syndrome in Nicosia, Cyprus: Dr Marina Aksenova , Veltischev Research and Clinical Institute for Pediatrics of the Pirogov Russian National Research Medical University, Moscow, Russia Assistant Professor Moumita Barua , Toronto General Hospital, Toronto, Canada

Dr Agnė Čerkauskaitė , Division of diagnosis and treatment of Rare Kidney and Metabolic Diseases, Nephrology Center, Vilnius University Hospital Santaros Klinikos, Vilnius, Lithuania Professor Constantinos Deltas , University of Cyprus, Molecular Medicine Research Center, Nicosia, Cyprus Professor Jie Ding , Department of Pediatrics, Peking

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University First Hospital, Beijing, China Professor Frances Flinter , Emeritus Professor of Clinical Genetics, Guy’s and St Thomas’ NHS Foundation Trust, London, UK Professor Daniel Gale , Department of Renal Medicine, University College London, UK Professor Danica Galešić-Ljubanović , Department of Pathology University of Zagreb School of Medicine, Head of Department of Nephropathology and Electron Microscopy, Dubrava University Hospital, Zagreb, Croatia Professor Oliver Gross , Department of Nephrology and Rheumatology, Georg-August-Universität Göttingen, Germany Professor Julia Höfele , Institute of Human Genetics, Munich, Germany Professor Hirofumi Kai, Graduate School of Pharmaceutical Sciences, Kumamoto University, Japan Professor Bertrand Knebelmann , Necker Hospital, Paris, France Associate Professor Ron Korstanje , The Jackson Laboratory, Bar Harbor, USA Professor Rachel Lennon , Wellcome Trust Centre for Cell-Matrix Research, University of Manchester, UK Associate Professor Beata Lipska , Department of Biology and Medical Genetics, Medical University of Gdańsk Dr Laura Massella , Division of Nephrology, Dpt. of Pediatric Subspecialties, Bambino Gesù Children's Hospital - IRCCS, Rome, Italy Professor Julian Midgley, Department of Paediatrics, Alberta Children’s Hospital, Canada Professor Jeffrey Miner , Washington University in St. Louis, USA Associate Professor Laura Perin , Saban Research Institute, University of Southern California, USA Professor Judith Savige , University of Melbourne, Australia Professor Roser Torra , Fundació Puigvert, Barcelona, Spain Professor Neil Turner , Professor of Nephrology, University of Edinburgh and Consultant Nephrologist, Royal Infirmary of Edinburgh, UK Patient representatives: Dave Blatt , Alport Foundation of Australia Maria José Cacharron , Spain Christof Finkler, Alport Selbsthilfe, Germany Susie Gear, Amanda McLean, Heidi Zealey , alport uk Julia Schifter , Alport Foundation Israel Andre Weinstock , USA Jessie Zhang and Mr Cai , Chinese patient group, China Our special thanks to all members of the Lennon Lab of Manchester University who are based at the Wellcome Centre for Cell Matrix and led by the inspirational Professor Rachel Lennon, also responsible for

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Professor Rachel Lennon being filmed by patient Sam Clarke

running Stoneygate Trust and Kidney Research UK’s Alport Research Hub . The team all volunteered and worked very closely with alport uk on a number of different events and projects over the year including The 2024 International Workshop on Alport Syndrome and are doing some amazing basic science research and collaborations with the Alport community around the world. The Lennon lab research work is internationally recognised as leading edge and helping us better understand what happens in the kidneys with Alport Syndrome. They also are always on hand to support alport uk with explaining scientific terms, helping design workshop agendas and generally engaging with the patient community. It is unusual for patients to be so engaged in research and we have the Lennon lab and Rachel Lennon to thank for this exciting collaboration that is leading to new ways of working.

Bernard Davenport and Rachel Lennon talking about the Alport Research Hub at the information day in Liverpool.

When we organise Alport information days , such as the one in Liverpool (July 2024), we work with local kidney doctors and their teams to volunteer, help us find suitable venues and engage the local patient

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community. To update people on the latest Alport research, we also rely on Alport experts including geneticists, hearing experts and the Alport Research Hub employees to give up a Saturday and to travel across the country to come and present their latest research. For the information day in Liverpool (July 2024) we are very grateful to the following, who volunteered to come to give presentations and answer questions: Austin Chukwu, Bernard Davenport, Frances Flinter, Dan Jagger, Rachel Lennon, Louise Oni.

The international workshops on Alport Syndrome also require a local team in that country to organise the local aspects of the workshop. For The 2024 International Workshop on Alport Syndrome , grateful thanks go to co-organiser and host Professor Constantinos Deltas , and the Biobank.Cy team , especially Ioanna Christodoulou.

Professor Constantinos Deltas and Ioanna Christodoulou being presented with gifts from representatives of the China Alport patient group.

There are also a number of people we would like to recognise for their contributions to our projects. Although we pay them for the project work they do, each has given way more time and ideas than they charge us for. Their continued support we very much appreciate:

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Sam Clarke filming at The 2024 International workshop on Alport Syndrome in Nicosia, Cyprus. See links above for examples of the 2-minute videos he makes.

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Hannah Russell introducing her story to the international group of patients gathered for the patient day ahead of The 2024 International workshop on Alport Syndrome in Nicosia, Cyprus.

Jayne Perrin and Hannah Russell getting things organised for the smooth running of The 2024 International workshop on Alport Syndrome in Nicosia, Cyprus.

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Section D Achievements and performance

Summary of the main achievements of the charity during the year

The achievements of alport uk this year build from last year and are summarised under the headings of our key objectives and areas of activity below. Overall, our main outcome is to create a more positive and brighter future for individuals and families living with Alport Syndrome. Being a rare and therefore small community, we aim to deliver sustainable strategic change for Alport Syndrome, using virtual networks and the limited resources to effectively support patients and develop treatments for Alport Syndrome. Positivity and engagement are the main ingredients for all the support we offer – we aim to inspire and encourage people living with Alport Syndrome to be optimistic and explore their own individual route to a brighter future.

The philosophy that underpins our performance

The Six Pillars of Wellbeing – long established as a framework to think about mental health and wellbeing - is a useful structure to encourage positive outcomes for individuals and families living with Alport Syndrome. The Six Pillars that inspire our activities:

As a tiny charity we are very clear what we can do

Supporting a rare disease is a challenge as there are few people who have Alports, or who want to research it or to fund it. So as a charity we aim to think wisely about how we use our strengths, capabilities, and resources and how to collaborate to complement these. Our volunteers have strong capabilities in delivering commercial innovation and collaboration across virtual networks of international stakeholders around the world. Some examples of the principles that guide what we do in our five key areas of work:

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  1. Support network: with a small, isolated patient community with such differing needs, we like to deliver personal support in a timely way that delivers practical advice and solves practical issues. alport uk’s role is to empathise, understand the needs/issues, advocate for patients (and researchers) and support delivery of solutions through a virtual organisation with minimal overheads. The power of the internet and social media provide us with very economical tools such as our closed Facebook community page, Alport Warriors and our public Alport UK Facebook page. With our limited resources, this often means facilitating patient/researcher access to resources. For example, alport uk facilitates patients getting the right diagnosis via genetic testing, understanding treatment options or facilitating the grant application process for holiday breaks via Kidney Care UK’s grant system. alport uk also writes letters of support for researchers to facilitate grant applications for Alport research.

Alport Warriors – private Facebook page

Alport UK – public Facebook page

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  1. Provision of information: with a diverse community and a very complex condition to explain, we try out different ways to provide information in a variety of formats that suit different stakeholders . With many of the community facing critical medical decisions as young adults, increasingly we use a combination of in-person Information Days with short videos, social media and engaging activities to enable the patient community to engage in formats and content they find valuable . For example, we encourage young adults to become our ‘media team’ at events, to engage in content, choose what is important and create videos and social media content themselves. Sam Clarke made additional videos about Living with Alport Syndrome to illustrate the positive attitude patients have despite facing health challenges – see one of the videos here that was filmed about a patient’s experience of a clinical trial: https://youtu.be/67w3zY-c0Zk.We also publish scientific information in the appropriate international journals so that it builds consensus across our community and is peer reviewed and globally available for researchers, clinicians and patients.

  2. Support research: with limited funds and fundraising capability, we choose to focus our efforts to inspire and facilitate collaborative behaviours such as information and resource sharing to facilitate and accelerate innovative ways of working and the development of new treatments and knowledge. For example, alport uk continues to facilitate the international research community coming together as the Alport Syndrome Alliance – a global network to advance treatments and knowledge for Alport Syndrome. alport uk organise in-person and online workshops to share and exchange ideas . This strategy aims to create a vibrant international research community that attracts more researchers and pharmaceutical or biotech companies interested in developing new treatments. These activities deliberately complement the strengths and activities of our colleagues in organisations such as: o Kidney Research UK – who raise money to fund specific UK Alport and kidney research projects eg elements of Rachel Lennon’s lab based at Manchester University.

o Alport Syndrome Foundation in the USA – who have more recently focused on very specific areas of Alport research that they prioritise eg relationships of aneurysms to Alport Syndrome, hearing and other topics at an early stage of development.

  1. Continued support of a UK research registry: with significant investment made by Kidney Care UK and Kidney Research UK into The National Registry of Rare Kidney Diseases (RaDaR) – the UK Kidney Association’s (UKKA) initiative designed to pull together information from patients with certain rare kidney diseases - alport uk support this vital project by encouraging patients, clinicians and kidney units to upload long-term clinical data into this database to enable natural history studies in the future to progress Alport Syndrome research . This will give a much better understanding of how Alport Syndrome affects people. It will also speed up research. The value for:

  2. Alport patients: o Access to their clinical data online which records blood and urine results, medications and clinic letters.

  3. o Ability to be contacted about future potential research studies or patient information events

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  - Contribute to the increase in knowledge about their condition.

Highlights: achievements and performance this year

Engaging our community in the diverse locations with greatest need

To be taken seriously as a rare disease community, by the pharmaceutical and biotech companies who develop treatments, we need an engaged patient community who understands the need for treatments and how vital engaging in clinical trials is for the development of treatments for generations to come. We have a number of different ways in which people living with Alport Syndrome engage across the UK and across the world. We specifically focus on and engage the larger

Learning about healthy kidneys – diet and exercise - at the Liverpool information day.

communities in the UK and abroad, informed by statistics such as the population tables below which show a) the locations of largest groups of Alport patients across the UK and b) the countries that have the largest

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group of Alport patients, if you assume that 80% of patients (typically with x-linked inheritance pattern) account for a prevalence of 1 in 10,000 in any population. The reality is that recent research by Gibson et al (2022) suggests the prevalence of the Alport gene COL4A5 (x-linked inheritance) is closer to 1 in 2,300 in any population which obviously increases the market size for treatments as indicated by the tables below:

A) Table showing locations of largest groups of Alport patients across the UK, based on prevalence in a city

Data reference https://worldpopulationreview.com/countries/united-kingdompopulation

These figures guide our UK engagement. A practical example of this, is that we prioritise running information days in UK cities where there are the greatest potential number of Alport patients for example systematically prioritising locations to date: London, Birmingham, Liverpool, Glasgow, Edinburgh, Cardiff, Manchester .

B)Table showing countries with the largest groups of Alport patients across the world, based on prevalence in a country population

Japan [| 123753000] 0.0202] a2] aza7s|_s3,80s|asbelow Data reference https://worldpopulationreview.com/countries/united-kingdompopulation

These country populations focus our international engagement activities. alport uk invested time and engagement efforts to engage patients from China, Indonesia, Nigeria, Brazil, Russia, Japan. alport uk do this through clinical contacts in the countries, or social media and in-person international workshops in countries with larger populations of Alport patients. To date we have patients and clinicians engaging in person or online from 66 countries . Thanks to alport uk’s initial investment in 2014 to support patients engaging in China, the Chinese patients have now set up their own Chinese Alport Syndrome Parents Association which today is now one of the largest patient organisations in the Alport global community connecting so many diverse people across Asia and

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significantly reducing their feeling of isolation. alport uk continue to support and collaborate with this vital community of people living with Alport Syndrome.

Support network proactively increased

Before the charity existed in 2013, it was typical that a family diagnosed with Alport Syndrome would never meet nor talk to anyone outside their own family impacted by the condition. There was no support network and no mechanism for connecting individuals and families. People felt isolated. Through regular annual national Alport Information Days , our web site and closed Facebook page - Alport Warriors - and other social media pages (Instagram, X formerly Twitter), support networks developed and each year the community feels stronger, more connected and able to deal with issues as they arise and particularly as we work through challenges together. People don’t feel alone anymore. This infrastructure proved invaluable in supporting patients through the unknown stages of the pandemic and as we emerged beyond.

The closed Facebook community – Alport Warriors – is one of the ways alport uk proactively encourages peer support – people living with Alport Syndrome helping others in a similar situation. The carefully moderated group continues to grow and now numbers over 1000 members from all over the world, trusting and appreciating the excellent advice we get from our colleagues in the UK’s NHS. In 2019, there were 350 members. Each year we are contacted by more and more people from around the world as they are diagnosed with Alport Syndrome. We provided advice specifically relating to COVID and the impact on kidney patients. As we work as a ‘virtual’ organisation anyway, alport uk was able to easily respond, during Covid, to the increase in requests and with more of the community online – patients and researchers – more people were able to help each other. This engagement from the wider community was valuable for all and so alport uk thrived in a really positive way, despite the pandemic. It was an opportunity for more to engage and more got value from this engagement.

One practical way of supporting patients is with the Don’t Wait Fund – a fund that people living with Alport Syndrome can apply to for a grant of up to £250 to start a new activity: Over this year, we funded 6 people living with Alport Syndrome, including:

Amaya received support for starting gymnastics lessons.

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Key support network achievements this year

On Saturday 21 October 2023 we hosted and facilitated a webinar on ‘ The missing variants in Alport syndrome’ , in collaboration with Professors Judy Savige (Australia) and Julia Höfele (Germany). Topics included: how to improve coverage by whole exome sequencing; detecting splicing variants; synonymous changes; and mosaicism. This informative, in-depth webinar had participation from geneticists, researchers and clinicians across the world. It is reassuring for patients who have been diagnosed with variants of unknown significance, or who have symptoms and family history of Alport but a negative genetic test, that research is ongoing, working to find answers to these questions.

Professor Julia Höfele and Professor Judy Savige moderating discussion at the online workshop.

Delivered an Alport information day in Liverpool (July 2024)

Austin Chukwu talking about kidney-friendly diet and the value of good cardiovascular exercise at the Liverpool information day.

Participant numbers Liverpool, July
2024
Adults 32
Youngadults 18
Older children and teens, 12+ 1
Younger children, 0-11 5
Total 56

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Introductions at the Liverpool information day.

These in-person Alport Information Days, advertised via our social media and email, combine a mix of information (from experts), social networking and getting to know the city we are in. The information days are organised around the country to attract diverse groups impacted by Alport Syndrome and target specifically the larger cities with large populations. The days particularly attract newly diagnosed individuals and families and connect them with others on similar journeys, whether as individuals, parents, young adults or children. We combine the activities with social activities particularly aimed at the young adults. The information day agendas are designed specifically to create a safe space for people to ask any questions they may have of the experts, to connect with others and engage in understanding Alport better. The days are ‘immersive’, designed to support and attract a diverse group of people. Professional childcare is a key element of the day, so both parents and children get their questions answered and they have the opportunity to connect and meet with others impacted by Alport Syndrome.

Shaista Dagia and Aura Zealey Smith recording videos at the Liverpool information day.

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Sam Clarke’s filmed stories of Living with Alport Syndrome are a key feature at the workshop. In Liverpool, we watched two new short films, featuring Mark and Pippa: https://youtu.be/OzYP42oXTAg, https://youtu.be/WJmCEqjUFYM When asked to comment on the value of the weekend in Liverpool to family and friends, the people living with Alport Syndrome commented:

“Amazing day, thank you so much everyone who spoke or organised the day, we have learned loads and really enjoyed meeting so many families.”

“Fantastic weekend love our Alports family lovely to meet new people and find out more information 😀”

“Thank you to everyone for making us feel included and very supported. Our very first time coming to these events and we learnt so much! 😊”

alport uk’s private Facebook page - Alport Warriors - provides support to a group that increased to over 1000 members. Membership is supported by Wilma Calderwood whose steady hand ensures the group remains in a well-protected, safe space. Discussions are initiated by both regular and new contributors and cover such subjects as kidney donation, hearing, sight, drug trials, transplant successes, successes at the annual Transplant games, fundraising opportunities, celebrating birthdays, links from other Alport Facebook sites, fundraising activities, and a range of questions about Alport Syndrome, its’ symptoms, treatments and their side effects. Connection with others who are in a similar situation is clearly valued by some people in the Alport community. Connection is not valued by all, so we aim to provide support for individuals or families in other ways to suit their needs.

Dan Long, one of our young adult volunteers and part of the Alport Avengers (young adult) group, participating at the Liverpool information day with his son.

One woman living with Alport Syndrome commented:

“Having such a rare disease can be really isolating... Knowing there are others, all at different stages in this group that you can check in with is so reassuring when facing all the different milestones of this disease such as being pregnant with alports, then having a child with alports, being advised that your young child should start meds, watching your child get hearing aids for the first time… just some of the scary bits we have faced so far… and managed. It’s great to have a private, safe space to have

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your ‘wobbles’ while you work through stuff. Many thanks for all the support and advice that everyone offers.”

A large percentage of patients with Alport Syndrome face Chronic Kidney Disease (CKD) in their late teens or early 20s and will require dialysis or a transplant. The exact details of prognosis for the genetic mutations of these young adults are not yet known, so the young adults face an emotional ‘waiting game’ for their kidney function to start declining. Some describe it as a ‘timebomb’! The young adults find it most helpful to connect with young people of their own age – peers who provide information from their own personal experience - so they can learn from and mentor each other when facing these particularly challenging times such as declining kidney failure and transplants. This is one of the roles of the Alport Avengers group – a group of 18–35-year-olds that emerged and was set up on WhatsApp. If a young adult has a question or a parent of a young adult raises a question, alport uk offer membership of this vital group.

We arranged the fourth social event for the Alport Avengers in Liverpool to meet in person which they found incredibly valuable. They spent time variously talking, sightseeing and getting to know each other and, importantly, sharing experiences of Alport Syndrome.

The Alport Avengers – young adult group living with Alport Syndrome - met and re-connected at the Liverpool information day for a social.

We continued the dissemination of information and offering support for both patients and carers, including:

Provision of information

With the help of our scientific advisors, alport uk continue to offer information and expert advice on our closed Facebook page – Alport Warriors - to the community to answer queries as they arise. This

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approach - informing people to enable them to take control and build resilience - is vital as our community has so many differing needs, many different age groups, at differing stages of kidney failure, undergoing different types of kidney replacement therapy and many patients and family members from other countries seeking advice. We are very proud of the alport uk team, how they anticipate queries, source expert advice and information to enable people to stay as calm as possible during challenging times when newly diagnosed etc, including sourcing food banks and writing letters to employers to explain the needs of their employees with Alport Syndrome. We are incredibly proud of the patients, their positive and pragmatic approaches to looking after themselves and helping each other across the community.

As mentioned above in the ‘Support’ section, the Alport Avengers group (18-35 year-olds) on Whatsapp continues to grow and the young adults share the information they’ve learned from their individual journeys. The group is monitored to make sure the information is accurate and relevant.

Young woman: “I like the fact that it doesn’t feel too formal. It’s a group of friends, where you can ask questions, compare symptoms, discuss struggles, but also have a laugh! Without the group I think people could potentially feel more isolated and not have that space they can easily access! Sometimes posting on a social forum feels intimidating, so this is a nice balance :) “

Young man: “For me mainly, I love that we all feel comfortable sharing how we feel in real time, knowing that we're going to get a quick response from someone who fully understands the challenges we might be facing. It provides a level of reassurance and understanding that I (and I know many others!) never got while growing up.”

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https://youtu.be/HnwKsDMms8A

We are very grateful to patient Sam Clarke for making these upbeat and very professional videos and all the incredible people who agree to be filmed and share their thoughts and stories. Sam is exemplary in that he also is willing to collaborate with other Alport patients on the content and editing. Sam himself gets a lot of value from meeting members of the Alport community and he talks openly about how it helps his own mental health and living with the ‘timebomb’ of when his own kidneys would fail. The work on these videos means we have a very engaged young adult group who feature on the videos telling their stories and sharing their opinions, plus doing some of the interviews to create the content. The success of content and style of these videos is because they are designed and filmed by people living with Alport Syndrome for people living with Alport Syndrome. As a result, the videos are often watched by clinicians and researchers and admired for their inspiration. In addition to being excellent providers of information, the videos also inspire many others who watch them. The videos demystify what is it is like to live with Alport Syndrome and why patient/research scientist collaboration on Alport research is so important. In addition to being good information providers, the videos are excellent emotive marketing tools to potential funders and give a lot of positive hope for the community and people who want to find out more about it.

A number of years ago, a very successful series of two-minute animated videos were written, illustrated and produced by a group of our young people with Alport Syndrome for their peers , some in collaboration with University of Manchester. The writing of the videos and working with the clinicians to make them scientifically accurate was a valuable process for the young people to engage in understanding Alport better as sometimes they can be in denial about what is important to keep them healthy or sources of support. We continue to use these videos, pasting the links onto Facebook when questions are raised by patients, carers and their families about Alport. Topics included:

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the young patients with Alport Syndrome) at The 2019 International workshop in Siena, Italy https://youtu.be/JRsJtUu8Lh8

When someone is diagnosed with Alport Syndrome, some of the regional genetics units e.g. at Bristol Genetics lab and some of the paediatric kidney units e.g. at Manchester University Hospital, have a small leaflet giving some summary details about the condition and our alport uk leaflets. Beyond this, there is an array of information one can find on the web, but it is hard to decipher what is medically correct or up to date. On our website is:

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Supporting or driving research?

With limited funding available for rare kidney disease research, alport uk’s strategy is use our small amount of funding to facilitate a virtual Alport research collaborative giving support, encouragement to scientists and to drive towards deadlines – what we call the ‘ oil to lubricate the Alport research ecosystem ’ to accelerate research. Instead of funding a specific project we invest considerable time and our limited funds to get the research community together at international workshops to enable them to work together to set the research programme and create a vibrant and innovative research community that attracts more researchers and pharmaceutical companies interested in developing new treatments. The emerging innovative and vibrant global network – the Alport Syndrome Alliance - is advancing treatments and knowledge. Over eight international workshops, the clinicians and laboratory scientists featured 370 new research projects. Many went on to publish their findings in international journals or forge new research collaborations .

Alport UK is closely involved in an exciting new research development – the Alport Research Hub , a Manchester-based collaboration between Kidney Research UK and the Stoneygate Trust. The hub is directed by Professor Rachel Lennon from the University of Manchester, in collaboration with Professor Daniel Gale from University College London and Professor Neil Turner from the University of Edinburgh, all three of whom are Trustees of alport uk. The first hub meeting kicked off in January 2022 and was launched in June 2022, and aims to deliver a world leading research programme. Using patient data along with a new platform of technologies to test new treatments such as gene therapy, researchers aim to deliver major results within five years; this acceleration in research is extremely exciting for Alport patients, researchers and clinicians. Here is a short film that explains the Hub: https://youtube.com/shorts/4SKzPemRYCU.

As part of the need to provide people living with Alport Syndrome, with the most up to date information, we often provide links to the series of over 36 international Alport online workshops , which were run and moderated by our young adult Alport patients. The workshops are all listed on alport uk’s YouTube channel @alportworkshops: https://tinyurl.com/y9cuhgby . Subjects covered include: Transplantation experience, hearing, eyes, genetics and family planning , and spotlights on labs around the world researching Alport Syndrome.

Building on the Alport research indicators from 2019

In the 1990s, groups of leading clinicians, academics and scientists regularly met to discuss topics related to Alport Syndrome. They published a number of key papers about Alport Syndrome, but the regular meetings stopped. In 2012, alport uk commissioned a web audit of people publishing material on Alport Syndrome through to the current day and prepared a report on the status of research into Alport Syndrome. This report was used to identify the missing areas of activity and needs for research including: • A shared international strategy and plan for Alport Syndrome research

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In 2019, to check on the performance of our investment to get researchers together through these workshops, alport uk circulated a simple survey with the Workshop Organising Committee members and their research teams (ie not the full Alport research community, just some of the key members) to understand the impact of the international workshops, emphasis on collaboration and how much research is now being done. Overall, the numbers indicate a very healthy research community to whom we are incredibly grateful for all they do to help with the awareness and understanding of Alport Syndrome by delivering:

• over 90% of the projects and publications were collaborative efforts. These survey results confirmed to alport uk that our efforts to drive collaboration and accelerate research are delivering the results we need. Indeed, at the time of writing, there are now over 400 new projects featured at international workshops since 2014. The Alport research progress is accelerating and alport uk’s strategy to use workshops to drive Alport research is the right approach to both drive research and engage new communities to join the global network.

The 2024 International Workshop on Alport Syndrome, Cyprus

Participants at The 2024 International workshop on Alport syndrome in Cyprus.

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To continue the collaborative international workshops in Oxford (2014) Göttingen, Germany (2015), Glasgow, Scotland (2017), Siena, Italy (2019), online (2021) and Calgary Canada (2022 – one-day hybrid format), alport uk delivered the seventh workshop in the series: The 2024 International Workshop for Alport Syndrome, in Nicosia, Cyprus . The 3-day workshop, organised in collaboration with Professor Constantinos Deltas and his team at the Cyprus Biobank, refreshed the Alport Syndrome Alliance’s global network with their shared aim to advance treatments and knowledge. The planning started in earnest over the summer to get the workshop programme ready for the workshop in March 2024. alport uk restarted the conference calls with the international workshop organising committee to share progress, keep the researchers engaged in delivering the agenda in a number of key areas such as genetics, pathology (as there is an increasing interest in this area), clinical guidelines, registries, basic science and particularly new therapies.

Joint organisers of The 2024 International workshop on Alport Syndrome in Nicosia, Cyprus: Biobank.cy - Professor Constantinos Deltas and Alport UK – Susie Gear.

Highlights from The 2024 International workshop on Alport Syndrome

14-16 March, Nicosia, Cyprus

Overall, 145 people participated in the workshop from 19 countries and featured 60 new Alport research projects and included:

The global Alport community now has over 25 pharmaceutical and biotech companies actively exploring new treatments and some already active in clinical trials. These divide into two routes that deliver the global community’s research strategy created in 2014:

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  1. Alport specific (e.g. gene therapy) - These can take years (can take 25 years) to develop, but with 6 progressing this is exciting news. The global community will need to effectively assess priorities, find funding for some and drive through pre-clinical studies and then clinical trials etc.

  2. Not Alport specific but protect kidneys for longer and reduce time on dialysis/transplants. These take a shorter time to develop (10-15 years) so can protect kidney function in the meantime. A combination of these drugs (our USA patient colleague on the global committee calls it an ‘Alportini’ cocktail ) could potentially delay the need for dialysis for a lifetime, particularly for the milder forms of Alport which we now know are more prevalent in a population (1 in 200) than we first thought. As a community, we need to be careful that Alport is not ‘used’ by companies seeing us as an easy engaged and capable community to do easy general kidney trials that don’t specifically benefit Alport kidneys but give the company safety data.

We heard from a company that is treating children with gene therapy for sensorial deafness – different cause from Alport – exciting evidence for how gene treatments can reach the ear. It was our Russian professor (children’s kidney doc) who alerted us to this work.

With an increasing number of patients and patient families, who have relevant careers in pharmacology, rare disease clinical trial networks, medicine, research, mental health, global clinical trials and business, our Alport research ecosystem has the right expert patient leadership to drive the innovations to deliver safe treatments in the next 10 years .

Huge thanks go to our global Workshop Organising Committee (listed earlier in this report in volunteers section) who advise on the science and all aspects of the ecosystem. Their combined expertise and thinking drives the science and progress. The intellectual and political power of this group is invaluable. For example, Professor Roser Torra, recently elected as the new head of the European kidney association (ERA) and Associate Professor Beata Lipska-Ziętkiewicz chaired the development of European treatment guidelines for Alport so everyone with Alport across Europe (including the UK) has the right to safe treatments.

These are some of the many important elements of the research ecosystem for Alport that will attract additional researchers to choose to work in Alport and join our community in the next 10 years.

According to Professor Tobias Huber (President of the International Society for Glomerular Disease), one challenge we face is ‘unless people participate in person, they don’t experience the full value of the global community’.

Feedback from workshop participants:

97% felt that the intended outcomes were achieved. Outcomes for The 2024 International Workshop on Alport Syndrome:

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A younger participant at The 2024 International Workshop on Alport Syndrome gets to meet zebra fish who have 70% in common with human DNA and by studying them, we learn a lot about Alport Syndrome.

Comments and feedback we received about The 2024 International Workshop on Alport Syndrome:

‘I'm really thankful for the opportunity to attend this workshop, and that you made my participation possible through the generous provision of travel expenses and accommodation. During my time at the workshop, I had the privilege of meeting numerous individuals who share similar journeys with Alport Syndrome. Interacting with them not only provided me with a sense of community but also allowed for the exchange of knowledge and personal stories, which greatly enriched my

understanding of the condition. Moreover, the sessions and discussions facilitated at the workshop were enlightening, offering amazing insights into various aspects of Alport Syndrome, including its diagnosis, disease management, and ongoing research on new treatment methods. As I return from this workshop, I carry with me not only a wealth of newfound knowledge but also a renewed sense of purpose. I am inspired and motivated to utilize the knowledge and skills acquired during this event to make a meaningful difference in the lives of others affected by Alport Syndrome here in Croatia. In conclusion, I extend my sincerest thanks to the organizers, sponsors, and fellow participants of the Alport Workshop for their unwavering support and for creating a platform where individuals like myself can come together, learn, and be part of the change.’ – Croatian patient

‘This was a truly amazing experience for me as a basic scientist. The connection of patients, clinicians, pharma companies and basic scientists was exciting, educational and transformational for me. I wish there were many more meetings like this. I think this sort of gathering is invaluable for advancing treatment options for patients. As a basic scientist I now understand more about the type of research that I can do to provide more powerful insights into Alports. I'm also more motivated than ever. Thank ’ – you!! scientist, USA

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‘It was very helpful in meeting people (patients, nephrologists, researchers, …) and getting an update on the scientific progress on Alport.’ – pharmaceutical representative, France

‘The scientific agenda was really satisfying and patient contributions was special. Thank you.’ – laboratory scientist, Italy

‘New advances in treatments were very useful to me and this is one of the only places where I could see all of this cutting edge information in one place. Tremendous.’ – father and teenage son (patients), USA

‘The gene therapy session was very good- encouraging to see several research groups contributing in the very challenging area.’ – laboratory scientist, UK

‘I was very impressed with the breadth of speakers' expertise, especially those who at first pass seemed to do work that was questionably related to Alport syndrome. I appreciated that the organizers thought outside of the box when planning the agenda and topics. Great work!’ – clinician, USA

One of the Biobank.cy team from Cyprus presenting a poster to Dan Jagger, a hearing scientist, from the UK.

‘I wanted to thank you for the great workshop in Cyprus. It was very well organized, interesting and engaging. We learnt a lot and were happy to meet this wonderful community you built.’ – pharmaceutical representative, Israel

‘I enjoyed and looked forward to participate to this Alport Workshop, as every other Workshop I attended in the past three years as I started my PhD research in Alport syndrome. Every time I leave the workshop excited and wiser.’ – laboratory scientist, Cyprus

‘The best conference/workshop experience ever. This workshop goes from strength to strength and it is incredibly effective and focussing our minds on the challenges in Alport’ – clinician, UK

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Shining a light on Alport Syndrome: a one-day workshop for Asia

At the end of this reporting year, the Alport UK team, in collaboration with Associate Professor Ng Kar Hui and her colleagues at the National University Hospital, Singapore, started to plan in earnest for this one-day workshop in Singapore. Associate Professor Ng Kar Hui presented at the workshop in Cyprus in March 2024 on the management of Alport Syndrome in places with lower resources in South-East Asia, and was inspired to organise and host this workshop to engage others in the region.

The 2025 International Workshop on Alport Syndrome, Beijing

To keep the momentum of research and the collaborative group, a date and location was agreed for the next international workshop on Alport Syndrome, which will be in Beijing in September 2025, hosted by and organised in collaboration with Professor Jie Ding, her colleagues at Peking University First Hospital and the Alport patient group in China.

Support of a UK research registry

In parallel to alport uk being set up, the then called UK Renal Association - (now called UK Kidney Association UKKA) established a working group

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on Alport Syndrome, funded jointly by Kidney Research UK and Kidney Care UK (previously British Kidney Patient Association) to support the development of a national renal registry of patients, called RaDaR. RaDaR. Some of the trustees from alport uk contribute to the working group on an ongoing basis to devise ways of promoting RADAR to patients and clinicians across the UK to increase the number of patients and patient records online as this will provide invaluable data for research to understand the natural history of Alport Syndrome. At the time of writing, RaDaR has over 1,000 patients registered (compared with the 800 registered in the previous year) as having Alport Syndrome and with some clinical data going back 30 years. alport uk specifically contribute to the support of this UK research registry of patients and an international alliance of patient registries by:

Generation Study: Genomics England newborn screening programme

Following successful advocacy from Alport UK trustees and patient representatives, Alport Syndrome was added to the list of conditions which Genomics England will test for in the Newborn Genomes Programme: https://www.genomicsengland.co.uk/initiatives/newborns Alport Syndrome was added as early diagnosis can lead to earlier management and better outcomes. Alport UK is preparing to provide support and information to parents of newly diagnosed babies.

If anyone reading this annual report is interested in more information or to get involved or support us with activities or fund raising, please email Susie Gear (Chief Executive) or Hannah Russell (Engagement Director) at info@alportuk.org or call us on 01793 847264.

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Section E Financial review

Brief statement of the charity’s policy on reserves

Details of any funds materially in deficit

No funds in deficit

Further financial review details (Optional information)

alport uk’s principal sources of funds this year were again more diverse than in the previous year:

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

As funds were all allocated to specific activities that support our key objectives this year, there was no opportunity for investment during this accounting period.

Section F Other optional information

None

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Alport UK

Report and Financial Statement For the year ended 31[st] July 2024 Charity number: 1154774

Shilton Accounting Services 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN

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Alport UK Charity number: 1154774 Legal and administrative information

Charity name: Alport UK Charity registration number: 1154774 Type of organisation: Charitable Unincorporated Organisation Registered office and business: PO Box 329 Cirencester Gloucestershire GL7 3PX Trustees: Professor Colin Baigent Professor Danny Gale Susie Gear Emeritus Professor Frances Flinter Professor Rachel Lennon Amanda McLean Tim McLean Alice Turner Emeritus Professor Neil Turner Accountants: Shilton Accounting Services Certified Practising Accountants 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN

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Alport UK Charity number: 1154774 Independent Examiner’s report to the Trustees of Alport UK

I report on the accounts of the Charity for the year ended 31[st] July 2024 which are set out below.

Respective responsibilities of trustees and examiner.

The charity’s trustees are responsible for the preparation of the accounts. The charity’s trustees consider that an audit is not required for this year (under section 43(2) of the Charities Act 1993 (the 1993 Act) and that an independent examination is needed.

Basis of independent examiner’s report.

My examination was carried out in accordance with the General Directions given by the Charity Commissioners. An examination includes a review of the accounting records kept by the charity and a comparison of the accounts presented with those records. It also includes consideration of any unusual items or disclosures in the accounts, and seeking explanations from you as trustees concerning any such matters. The procedures undertaken do not provide all the evidence which would be required in an audit and consequently I do not express an audit opinion on the accounts.

Independent examiner’s statement.

In connection with my examination, no matter has come to my attention

  1. Which gives me reasonable cause to believe that in any material respect, the requirements of a) to keep proper accounting records in accordance with section 41 of the 1993 Act and b) to prepare accounts which accord with the accounting records and to comply with the requirements of the Act, have not been met.

  2. To which, in my opinion, attention should be drawn in order to enable a proper understanding of the accounts to be reached.

David Cuthbertson – ICPA Cert Acc (Open) Shilton Accounting Services 1[st] Floor 1 The Clock House Brize Norton Road Carterton OX18 3HN

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Alport UK Charity number: 1154774 Director’s report for the year ended 31[st] July 2024

The trustees present their report and financial statement for the year ended 31[st] July 2024.

Objects – The relief of sickness and the promotion of health of those people suffering from Alport Syndrome, in particular, but not exclusively by:

Governing document – the charity is governed by a constitution based upon a Charity Commission document that was adopted on 27[th] November 2013. A copy of the full governing document can be obtained from the charity.

Trustees - The overall responsibility of the organisation rests with the Board of Trustees. The selection of Trustees is designed to supplement the existing skills and expertise of the board and is governed by an informal skills assessment. The appointment of trustees is made in accordance with the constitution.

Risk assessment – Disclosure and Barring checks are carried out for all appropriate trustees, staff and volunteers. The Trustees have examined the major strategies, business and operational risks which the charity faces and confirm that systems have been established to enable regular reports to be produced so that the necessary steps can be taken to minimise these risks.

Public benefit statement – Alport UK is a patient-led organisation dedicated to facilitating a support and information network for all those affected by Alport Syndrome. Our vision is to ensure that all individuals and families with Alport Syndrome feel empowered to enjoy the best quality of life. This creates public benefits in health and community cohesion.

Reserves policy – The Trustees are actively trying to build reserves, with a view to being able to better support patients and facilitate international research collaboration. Minimum reserves are kept to cover 6-12 months of salaries and outgoings. In the event that reserves reach more than 24 months commitments, trustees will review.

This report was approved by the Trustees on 19 December 2024 and signed on its behalf by

Susie Gear

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Alport UK Charity number 115774

Statement of Financial Activities (including Income & expenditure Account) For the year ended 31[st] July 2024

Restricted Unrestricted Total 2023
Income
Donations/Sponsors 837 121,994 122,831 87,060
Delegate fees 22,499 2,050 24,549 3,011
Fundraising/merchandise 3,685 3,685 2,119
Other income 419 2,783 3,202
Total Income 23,755 130,512 154,267 92,190
Expenditure
Employee costs 42,969 42,969 30,241
Bank & service charge 114 114 70
Direct Events costs 21,135 163 21,299 9,223
Branded goods 3,621 3,621
Administration 1,044 1,044 2,700
Travel & subsistence 316 61,309 61,625 37,466
Internet/website 3,083 3,083 4,493
Marketing 7,292 5,735 13,027 3,803
Insurance 726 726 710
Subscriptions 113 1,776 1,889 1,807
Bursaries/grants 456 1,477 1,932 2,057
Others 2,879 2,879
Accountants fees 1,288 1,288 1,288
Total Expenditure 29,312 126,184 155,496 93,858
Net movement (5,556) 4,328 (1,228) (1,668)
Transfers 0 0 0 0
Opening Balance 26,325 21.375 47,700 49,367
Closing Balance 20,769 25,703 46,472 47,699

There are no recognised gains or losses other than in the Statement of Financial Activity.

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Alport UK Charity number 115774

Balance Sheet as at 31[st] July 2024

Notes 2024 2023
£ £
Fixed assets 3,075 3,075
Current assets
Cash at bank 4 44,397 47,048
Total Current assets 44,397 47,048
Current liabilities
Creditors falling due within 1 year 5 1,000 2,424
Net current assets 43,396 44,624
Assets less liabilities 46,472 47,699
Represented by
Restricted funds 20,769 26,324
Unrestricted funds 25,703 21,375
Total funds 6 46,472 47,699

Signed on behalf of the charity’s trustees

Susie Gear

Date: 19 December 2024

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Alport UK Charity number: 1154774

Notes to the financial statements For the year ending 31[st] July 2024.

1. Accounting policies

a. Basis of accounting

The financial statements have been prepared under the historic cost convention with items recognised at cost or transaction value unless otherwise state in the relevant notes to these accounts. The financial statements have been prepared in accordance with the Statement of Recommended Practice: Accounting and reporting by Charities preparing their accounts in accordance with Financial Reporting Standards applicable in the UK and Republic of Ireland (FRS102) issued on 16[th] July 2014 and the Charities Act 2011. The trust constitutes a public benefit entity as defined by FRS102.

b. Going concern

The trustees consider that there are no material uncertainties about the trust’s ability to continue as a going concern.

c. Fund accounting

Unrestricted funds are available for use at the discretion of the trustees in furtherance of the general objectives of the charity. Restricted funds are subject to restrictions on their expenditure imposed by the donor or through the terms of an appeal.

d. Income resources

All incoming resources are included in the statement of financial activities when the charity is entitled to the income and the amount can be quantified with reasonable accuracy. The following specific policies are applied to particular categories of income:

Voluntary income is received by way of grants, donations and gifts and is included in full in the Statement of financial activities when receivable.

Grants, where entitlement is not conditional on the delivery of a specific performance by the charity, are recognised when the charity becomes entitled to the grant.

Donated services and facilities are included at the value to the charity where this can be quantified. The value of services provided by volunteers has not been included in these accounts.

Investment income is included when receivable.

Income resources from charitable trading activity are accounted for when earned.

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Alport UK Charity number: 1154774

Notes to the financial statements For the year ending 31[st] July 2024.

e. Resources expended

Expenditure is recognised on an accrual basis as a liability is incurred. Expenditure includes any VAT which cannot be fully recovered, and is reported as part of the expenditure to which it relates:

Costs of generating funds comprise of the costs associated with attracting voluntary income and costs of trading for fund raising purposes.

Charitable expenditure comprises those costs incurred by the charity in the delivery of its activities and services for its beneficiaries. It includes both costs that can be allocated directly to such activities and those costs of an indirect nature necessary to support them.

Governance costs include those costs associated with meeting the constitutional and statutory requirements of the charity and include accountancy and legal fees.

All costs are allocated between the expenditure categories of the SoFA on a basis designed to reflect the use of the resources. Costs relating to a particular activity are allocated directly, others are apportioned on an appropriate basis.

2. Staff costs

The charity employed an average of two members of staff in the financial year.

3. Trustee remuneration & related party transactions.

The trustees all give freely of their time and expertise without any remuneration or other benefit in kind. Expenses incurred on behalf of the charity are reimbursed at cost.

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Alport UK Charity number: 1154774

Notes to the financial statements For the year ending 31[st] July 2024.

4. Cash at bank.

h at bank.
Barclays General Account XXXXX405 18,242.51
Barclays Research Account XXXXX642 1,594.29
Barclays Don’t wait Account XXXXX210 17,497.68
Caxton FX 5,295.01
Paypal 1,766.76
Total 44,396.25

5. Creditors: Amounts falling due within one year

Accounting fee accrual £1,000

6. Movement in funds

vement in funds
Opening
balance		 Incoming
resources		 Outgoing
resources		 Balance
31stJuly 2024
Restricted £26,324 23,755 29,312 20,769
Unrestricted £21,375 130,512 126,184 25,703
Total £47,699 154,267 155,496 46,472

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