## ANNUAL REPORT AND ACCOUNTS For the year ended 31 July 2023 ## **Trustees' Annual Report for the period** ||Period start date|Period start date|||Period end date|Period end date|| |---|---|---|---|---|---|---|---| |**From **|1|8|2022|**To**|31|7|2023| ## 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|**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||Wholeyear|| ||Susie Gear|Chief Executive|Wholeyear|| ||Frances Flinter||Wholeyear|| ||Rachel Lennon||Wholeyear|| ||Neil Turner||Wholeyear|| ||DannyGale||Wholeyear|| ||Tim McLean||Wholeyear|| ||Amanda McLean||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|| ||| ||| ## **Names and addresses of advisers (Optional information)** _See table of Advisors over the page_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 1 |**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| |**Clinical 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| |**Eye specialist**|Dr Omar Mahroo|St Thomas’ Hospital Campus, 3rd Floor South Wing Block
D,Westminster BridgeRoad,LondonSE1 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||| |||| ## **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 - (eg. trust, association, company) 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: - 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 - Policies and procedures for the induction and training of trustees • Provided with a guide for how the charity operates – this now includes a set of policies on topics such as expenses, relationship with pharmaceutical companies, sponsorship etc. - • Disclosure and Barring checks • Given a briefing on the charity and engaged in activities to enable them to participate fully in the decisions of the charity. Organisational structure of the charity and wider network - We are a small charity and so have a very flat organisational structure. - • Day-to-day activities are run by one of the trustees – Susie Gear with one part-time employee and a number of volunteers. All day-to-day decisions are jointly taken with at least one of the other Trustees eg Julia Skelding, Emeritus Professor Frances Flinter or Professor Rachel Lennon. If we need to check any of the decisions, we involve the other trustees - who are less involved in the day-to-day activities and so provide excellent challenge and objectivity. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 2 them. - Our closed Facebook page, Alport Warriors, is moderated day-to-day by one of our volunteers – Wilma Calderwood – with back up from Hannah Russell and Susie Gear and with any specific medical questions answered by our medical advisory team – see list above. - • Our public facing social media eg Facebook and Instagram pages are run by Susie Gear, Hannah Russell and some of the younger Alport Warriors. - Alport UK’s Scientific Advisory Committee provide expert medical input and advice as required: Professor Colin Baigent (Strategic direction of research and Clinical trials), Emeritus Professor Frances Flinter (Clinical and particularly Genetics and diagnoses), Professor Danny Gale (Rare Renal Database RaDaR and Clinical trials), Professor Rachel Lennon (Paediatric Nephrology, Podocyte research and clinical guidelines) and Professor Neil Turner (Adult Nephrology and RaDaR). - Alport UK’s international Workshop Organising Committee is made up of a wide range of 39 experts – researchers, clinicians, academics and Alport patients – with representation from Australia, Canada, China, Croatia, Cyprus, France, Germany, Israel, Italy, Japan, Lithuania, Poland, Russia, Spain, UK, USA. - 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 Alport UK’s policy to encourage patients and their families to partner with their own clinicians to explore their questions and concerns together. This is because the questions often require a detailed clinical history, which a patient’s own clinician is best-placed to support with. Where this is not possible or for more general questions, we have a scientific advisory committee which is available, with 24 hour turnaround, to provide expert medical input and advice to patients and their families. All committee members are practising/retired clinicians in the NHS and are recognised internationally for their experience and expertise. We also have a wider network of international experts from whom we can get additional opinions, as required. As we support a number of young adults and vulnerable adults, we have a Safeguarding Officer, who we consult if there are any safeguarding concerns. Mental health is an ongoing challenge for patients living with a life-long condition where the health declines, so we encourage patients to seek professional help from the NHS and help them access the necessary services often through renal units or Kidney Care UK. - • **Information** – all published information and recommendations published on our website, alportuk.org, is reviewed by members of our scientific advisory committee. - **Research** – all projects we embark on are reviewed by members of our scientific advisory committee and we get input from a wider network of international experts and patients, as required. This includes assessing clinical trials and although, as a charity, we never recommend participation in a trial, we direct patients to discuss clinical trials with their own clinicians and provide as much information as possible to support patients’ decisions on participating in a trial. If we have concerns with a trial, we publish views in international publications, as necessary. - **Collaboration** – is a core way of working for our charity. We collaborate with other national patient organisations and an international scientific community interested in research into Alport Syndrome. We run monthly conference calls and a series of international workshops for all involved to keep in touch with progress. Funds for these international research activities are kept in a separate bank account so that the international expenditure is transparent – and **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 3 - separate to the UK funds - to maintain the open collaborative working environment. To ensure all appropriate risks are managed related to this international collaboration, we have an international Workshop Organising Committee to ensure there is a balance of work and information across different countries or continents. Our aim is to collaborate with an increasingly diverse community to remove bias. - • **Fundraising, finances and projects** – As a small charity, we fundraise for specific projects and these funds are kept in separate bank accounts ‘ring-fenced’ for each project. The majority of our fundraising is through applications to larger charities that support small charities, such as ours, with funds allocated for specific activities, such as the information days or international workshops undertaken by alport uk. Increasingly, we also seek funding for work from biotech and pharmaceutical companies. We aim to raise collaborative funding for any project, so we are not reliant on one company for project funding which also means Alport UK is not associated with one company for one particular project. ## **Section C Objectives and activities** The objects of the CIO are the relief of sickness and the promotion of **Summary of the objects of the** health of those people suffering from Alport Syndrome, in particular, but **charity set out in its** not exclusively by: **governing document** - The establishment and facilitation of **a support network** for Alport Syndrome patients, carriers, their families and carers; - - The **provision of information** on Alport Syndrome; - The **support of research** into Alport Syndrome both in the UK and internationally; - - The **support of a research registry in the UK** and an international alliance of national registries **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 4 |**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)**|**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 organisation**dedicated to facilitating a
support and information network for all those affected by Alport
Syndrome.
**Alport Syndrome**is an inherited condition that can cause kidney failure,
deafness and eye abnormalities. Those that 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 a
family:https://youtu.be/4vRuYBn6St4.
**Our Vision**is to ensure that all individuals and families with Alport
Syndrome feel empowered to enjoy the best quality of life.
**Our Mission**is to work in partnership with individuals, families and the
scientific community to:
• Facilitate a**support**network for patients and families
• Be a conduit for high quality, accessible**information**
•**Raise the profile**of Alport Syndrome in the scientific
community
• Contribute to the international**research**agenda
•**Collaborate**on 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 strategy and plan for Alport
Syndrome using a programme of international workshops –
online and in-person.
b. Grow a global network – of patients, clinicians, laboratory
scientist and pharma companies – the Alport Syndrome
Alliance. The aim of the Alliance’s global network is to
advance treatments and knowledge.
4.**Collaboration**– Bring together the scientific community to work
across the different clinical disciplines that specialise in kidneys, ears,
eyes, mental health, other rare disease areas with similar issues etc.
and work with the nationalpatient organisations or other rare renal| |---|---| **Annual report up to 310723 310724 Final** 5 Annual report for alport uk to 31 July 2023 disease groups to share best practice with developed and developing countries. 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. Families connecting at the Newcastle information day (October 2022) **----- Start of picture text -----**
Children playing at the Cardiff information day (April 2023)
**----- End of picture text -----**
**Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 6 ## **Additional details of objectives and activities (Optional information)** You **may choose** to include further statements, where relevant, about: - policy on grant making; - policy programme related investment; - contribution made by volunteers. ## **Contribution by volunteers** **alport uk had one part-time employee over this period. The Chief Executive, leading the performance and achievements is a volunteer. alport uk mostly 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 have 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:** - **Saira Bhatti** for spending the time educating us on how to design websites to suit patient needs and for reviewing a number of website ideas and designs for both Alport UK and the Alport Syndrome Alliance. - **Katie Brown** for continuing to help us run the Alport online workshops and for moderating the young adult (18-35 year-olds) Whatsapp Group: Alport Avengers, even while her kidney function declined. - **Kimiya and Frank Bunger** for their excellent notes taken at the international workshop and work on a website for the Alport Syndrome Alliance. - **Wilma Calderwood** for her day-to-day moderation on our closed Facebook page, Alport Warriors, which saw the community double in size during the pandemic. - **Sam Clarke** whose 4,776-mile cycle ride in 2019 allows us to use the funds raised for the ‘Don’t Wait Fund’ to support patients with Alport Syndrome take up a new activity or hobby. - **Mary Lou McCarthy** for kindly giving up a weekend (when she typically does wedding photography) to come and take photographs in Newcastle at our information day. - **Dan Long** for running the production of our online workshops. - • **Alice Turner** for her continuing, enthusiasm and fundraising work, ideas and help with running alport uk and supporting fundraising activities post-pandemic and for her eternally positive attitude to fundraising. Alice also has a forensic knack of putting our annual accounts together and tracking down all receipts and invoices to make the accountant’s role much easier as he prepares the annual accounts. - **Archie Walker** for running the production of our online workshops. - • **Patrick Walker** for moderating our online workshops and engaging young adult patients at the in-person workshop at Calgary and other Alport Avenger social activities. - • **Heidi Zealey** for continuing to help us run the Alport online workshops and increasing responsibilities representing Alport UK with European patient groups such as FEDERG and ErkNET EPAGs. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 7 - **Aura Zealey Smith** for moderating our online workshops and engaging young adult patients at the in-person workshop at Calgary. **Grateful thanks to all those who raised money for us this year** – every penny makes a difference. Particular thanks go to: - **Lauren Brand** for her plant sales generating funds for alport uk - **Penny Calder and family - Hannah and Nicholas** - who raised money for alport uk in memory of their husband/Dad Nick Bundy. A big thank you to Battersea Choral Society (London) for choosing Alport UK as their charity for Christmas. Nick used to sing with the choir and they kindly donated their Christmas collection to Alport UK. Hannah and Nicholas Battersea Choral Society Christmas Concert in aid of Alport UK (December 2022) - **Sarah Forrester and her organising committee** at the Cirencester Kick Up your Heels Gathering in December 2022 (an annual reeling **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 8 event) that raises vital funds for Alport UK and other charities. Particular thanks go to **Cece Vass** and **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. All the proceeds of the teaching goes to Alport UK too. Some of the young people reeling in aid of alport uk, December 2022. - **Sandra Jones** for raising more funds by doing the Kiltwalk – this year in person rather than virtually Sandra Jones finishing the Kilt Walk **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 9 - **Margaret and Sam Maidment** for their fabulous ‘tea in a barn’ fundraising event. **----- Start of picture text -----**
=:SS ¢, RE AUF SPERionTSS RRPSLR ALE ES LEE— =ERE|
Margaret and Sam Maidment’s ‘tea in a barn’
**----- End of picture text -----**
- **Charlotte and Will Swain** who completed a incredible 10k run for alport uk Charlotte and Will Swain and family - **Those who donated funds raised from funerals** of loved ones - **All** those people who purchased digital Christmas cards to raise funds through Don’t Send A Card - **Everyone** who uses Amazon Smile and Easyfundraising for their shopping to raise small but important funds which keep the lights on at Alport UK. **Thank you to those who generously provided alport uk with a grant:** - **Amelia Chadwick Trust** - **D’Oyly Carte Charitable Trust** - **Dyer’s Company and other livery companies** - **Jeans for Genes** - **Popham Kidney Support** - **Kidney Care UK** - **Kidney Foundation of Canada** - **Kidney Research UK** - **Kidney Wales** - **Liverpool Charity and Volunteer Services** **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 10 - **Commercial companies – Calliditas, Eloxx, Sanofi, Travere** who sponsored either patient days in Newcastle or Cardiff or our international workshop which formed part of The 2022 International workshop on Alport Syndrome **And a number of people who wish to remain anonymous** but to whom we are very grateful for their support and encouragement. **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: - **Emeritus Professor Frances Flinter** - **Professor Danny Gale** - **Professor Rachel Lennon** - **Dr Omar Mahroo** - **Professor Neil Turner** - **Professor Colin Baigent.** **Alport online workshops** – Patients, patient families and clinicians continued to volunteer for alport uk. A small working group of volunteers was formed which included: **Susie Gear, Louise Hopkinson, Professor Rachel Lennon, Professor Jeffrey Miner,** and **Heidi Zealey** and **Katie Brown** . 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. Katie is to be particularly congratulated as she participated in workshops right up to her kidney transplant in the summer of 2022. Thanks also to **Dan Long, Archie Walker** and **Alice Cooper** 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. Thank you to **Patrick Walker** for his excellent video-editing work that makes each Podcast so professional when loaded onto YouTube. We **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 11 are so grateful for the ongoing inspiration from this group who help run the very professional **Alport online workshops** featuring the latest Patrick Walker moderating an online workshop 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, Aby Lucy, Patrick Walker, Andre Weinstock, 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, 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 **Andre Weinstock** (Alport Syndrome Foundation, USA), **Renee de Wildt** (The Netherlands), **Maria José Cacharron** (Spain) and **Daniela Lai and Rossella Ferrari** (Italy), **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 2022 International workshop on Alport Syndrome in Calgary, Canada: 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 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, **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 12 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 Clifford Kashtan** , Department of Pediatrics, University of Minnesota, USA **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 Alessandra Renieri** , Professor of Medical Genetics, Director of Medical Genetics Unit, Azienda Ospedaliera Universitaria Senese viale Bracci 2, Siena, Italy **Associate Professor Michelle Rheault** , Department of Pediatrics, University of Minnesota, 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 **Andre Weinstock** , USA **Maria José Cacharron** , Spain **Christof Finkler,** Alport Selbsthilfe, Germany **Susie Gear** , alport uk **Daniela Lai** , A.S.A.L., Associazione Sindrome di Alport, Italy **Julia Schifter** , Alport Foundation Israel **Renee de Wildt** , NierpatiëntenVerenigingNederland (NVN), The Netherlands **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 running the Stoneygate and Kidney Research UK 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 Alport Online Workshops 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 **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 13 explaining scientific terms, helping design workshop agendas and generally engaging with the patient community. It is unusual for Professor Rachel Lennon being filmed by patient Sam Clarke 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. When we organise **Alport information Days** , such as the ones in Newcastle (October 2022) and Cardiff (April 2023), we rely on local people living with Alport Syndrome and local kidney doctors to volunteer and help us find suitable venues, engage the local patient community etc. To update people on the latest Alport research, we also rely on the Stoneygate and Kidney Research Alport Research Hub employees to give up a Saturday and to travel across the country to come and present their latest research. For these two information days we are very grateful to the following volunteers: - **Newcastle Alport information day** (October 2022) with thanks to: **Amanda Little, John Sayer, Neil Turner** - **Cardiff Alport information day** (April 2023) with thanks to: **Mark Thomas, Pippa Llywelyn Thomas, Sian Griffin** and **Mychel Morais.** The international workshops on Alport Syndrome also require a local team in that country to organise the local aspects of the workshop. For helping alport uk with **The 2022 International workshop on Alport Syndrome** , grateful thanks go to **Julian Midgley, Tanya Graves-Smith** and **the Pedersen family** and the organisers of the International Society of Pediatric Nephrology (IPNA) who kindly allowed the workshop to be a pre-meeting to their 19[th] congress. 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: - **Jane Keightley** – for her marketing advice and on-going support to build the brand of Alport UK to raise its profile along with communicating and engaging people in our aims and objectives and core activities. We also very much appreciate Jane’s writing and editorial advice that sets the written tone for all our communications. - • **Robina Newman** – for her continued work on our brand and design **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 14 and generally helping us to create a bright and distinctive identity that sets the visual tone for our activities including some lovely branded merchandise which helps our patients be proud of their Alports and of our community. **----- Start of picture text -----**
a Seg IEP ; EF ESN
Alport UK merchandise which is now sold through an online shop
**----- End of picture text -----**
**Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 15 - **Chris Francis and Paul Heaps –** who kindly took on the challenge of taking photos whilst we worked in Cardiff and Newcastle to share what we do, celebrate our special team, and photograph all who participated. - • **Sam Clarke** – for his excellent videos that are making our work come alive and enabling alport uk to share the important work we do. This year Sam filmed: - **Some more short documentaries of people living with Alport Syndrome** – see links to videos in later section. - **People’s reactions to the international workshops we run for the Alport Syndrome Alliance** – to grow the global network advancing treatments and knowledge. For example, Sam came to Calgary, Canada to film the The 2022 International workshop on Alport Syndrome. These films help us get funding for future workshops. - **Alice Cooper** – continued in the role of Engagement Manager for alport uk until the end of 2022 and worked with the alport uk volunteers including Susie Gear to: - maintain the Alport Online workshop process, engaging the Alport community in the workshops - reach out to a wider group of people across the world to engage them in the international workshops using mailings and social media - update and deliver an invaluable website for the Alport Syndrome Alliance to automate the registration to register all those interested in participating in The 2022 International workshop on Alport Syndrome in Calgary, Canada - organise the first in-person Alport information day (after Covid) in Newcastle in October 2022, soon after the Calgary workshop - design branded merchandise and designed an online shop to sell to much needed funds for alport uk. - Alice contributes many more hours than the part-time work we pay her for, particularly in the lead up to key events such as The 2022 International workshop on Alport Syndrome. We are incredibly grateful for Alice’s wonderful dedication and ability to get things done which accelerates what alport uk delivers. Alice Cooper supporting one of the online workshops **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 16 Thank you to Alice Cooper from those at the Newcastle information day, October 2022 - **Hannah Russell** initially became a volunteer for alport uk soon after her daughter Florence was diagnosed with Alport Syndrome. Hannah’s role as Engagement Director was formalised and became a paid part-time role in 2023. Hannah consistently gives alport uk many more hours than she is employed to do. With her understanding of the journey that newly-diagnosed families go on, means Hannah senstively supports those who can find the initial diagnosis challenging. Hannah does this selflessly and with great compassion helping them adjust to their situation and connect with others living with Alport Syndrome. - **Jayne Perrin** joined alport uk in June 2023 initially as Adminstrator. With Jayne’s background as a company secretary and with the templates, filing and systems kindly set up by Alice Cooper as part of her handover, Jayne is quickly mastering the processes to run events and manage alport uk operations. Jayne’s first big event to run is The 2024 International workshop on Alport Syndrome in Cyprus in March next year. Jayne clearly thrives off the everyday challenges alport uk sets her, is expert at working remotely and it is great having her as part of the team. Jayne already keeps us smiling and reminds us we achieve a lot as three part-time women running the charity with so much help from the incredible networks of amazing volunteers. ## **Thank you to all who contribute!** Chief Executive, Susie Gear and Engagement Director, Hannah Russell **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 17 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 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. Measuring our performance and listening to patient feedback on what works and adjusting what we do is vital: Patient: _“Thank you for another truly excellent meeting Susie & all. This is such an important activity & we appreciate your tremendous efforts and skills in pulling us all together.”_ ## **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: - **Stress management** – keeping the community calm and informed with the latest information, so they can become more independent, strong and resilient over time - **Nutrition** – inspiring the community to eat healthily to protect their kidneys for as long as possible and when on restricted diet, explore new foods they can eat - **Community** – connect to reduce the feeling of isolation caused by having a rare disease that few others either know or understand - **Sleep** – ensure the community members can have a routine with good sleep to enable them to deal with the rollercoaster journey that some individuals and families face as part of living with a rare disease and coping with critical events along the way, such as hearing declining, kidney failure and eye issues. - **Exercise** – we know cardiovascular exercise is good for the kidneys. It is also vital to rebalance the chemical impact brought on by the feeling of anxiety that overwhelms some people living with the fact that their or their children’s kidneys may fail and hearing might decline at some unknown time in the future - **Meaningful activity** – encourage individuals, families, and researchers to connect around a shared objective of helping our community in some way, whether it be volunteering for our community, advocating, fundraising, collaborating on research or useful information or sharing stories to help others living with Alport Syndrome. ## **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 **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 18 Section D Achievements and erformance p the world. Some examples of the principles that guide what we do in our five key areas of work: ## **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 ## **2. 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 **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 19 Section D Achievements and erformance p 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 trail: 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. **3. 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 use 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 complement the strengths and activities of our colleagues in organisations such as: - 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. - Alport Syndrome Foundation in the USA – who have more recently focused on very specific areas of Alport research that they prioritise eg relationship of annurisms to Alport Syndrome, hearing and other topics at an early stage of development. |**4.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:| |•
Alport patients:| |`o`
Access to their clinical data online which records blood and| |urine results, medications and clinic letters.| |`o`
Ability to be contacted about future potential research studies| |or patient information events| |`o`
Contribute to the increase in knowledge about their condition| |•
Clinicians:| |`o`
Share knowledge with other colleagues| |`o`
Use RaDaR as part of a research study or clinical trial.| |**5.Fundraising**| With a small number of people in the UK (compared with other countries with much larger populations) impacted by Alport Syndrome, awareness of the condition is limited and traditional fundraising by the public typically **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 20 Section D Achievements and erformance p focuses on the key health areas of cancer, heart conditions etc. **We heartily encourage individuals and families living with Alport Syndrome to fundraise when inspired to do so, by providing support, encouragement and new branded merchandise** (eg t-shirts, badges, wrist bands, shaking tins etc) to enable them to achieve whatever challenge motivates them. This means that **we raise significant funds for each major project (eg an international workshop or a new website) or a programme of activities (information days) by applying for grants from larger charities or from pharmaceutical companies** . We specifically support large fundraising events each year eg a dinner with an auction, a major activity eg swimming the channel or cycling round Europe etc. ## **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 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 group of Alport patients. numbers 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 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** Population - UK most populated cities 2024 Data reference https://worldpopulationreview.com/countries/united-kingdom-population These figures guide our UK engagement. A practical example of this, is that we prioritise running information days in UK cities where there are **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 21 Section D Achievements and erformance p 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** Data reference https://worldpopulationreview.com/countries/united-kingdom-population 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 there 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 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 or 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 995 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 **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 22 Section D Achievements and erformance p |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 8 people living
with Alport Syndrome:
• **A young woman in her 30s**who bought**gym kit**so that while on
dialysis and awaiting transplant, she could continue to exercise at the
gym.
• **A young man, aged 19**who, despite his kidney function declining,
learnt to be a ski instructor and bought**a ski jacket**.
• **An Aunt**to buy a**bike and bike helmet**for her nephew when he was
newly diagnosed with Alport Syndrome.
• **A young woman in her 20s**who got a grant to pay for a**gym**
**subscription**.
• **A woman**got a grant for her husband to get a**gym subscription.**
• **A mother of two**got three different grants for herself (half her annual
**gym subscription**) and her two boys to buy kit for their different
activities:**climbing kit**and**drama lessons**.
**Key support network achievements this year**
**Delivered two Alport information days in Newcastle**(October 2022)
**and Cardiff**(April 2023):|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 8 people living
with Alport Syndrome:
• **A young woman in her 30s**who bought**gym kit**so that while on
dialysis and awaiting transplant, she could continue to exercise at the
gym.
• **A young man, aged 19**who, despite his kidney function declining,
learnt to be a ski instructor and bought**a ski jacket**.
• **An Aunt**to buy a**bike and bike helmet**for her nephew when he was
newly diagnosed with Alport Syndrome.
• **A young woman in her 20s**who got a grant to pay for a**gym**
**subscription**.
• **A woman**got a grant for her husband to get a**gym subscription.**
• **A mother of two**got three different grants for herself (half her annual
**gym subscription**) and her two boys to buy kit for their different
activities:**climbing kit**and**drama lessons**.
**Key support network achievements this year**
**Delivered two Alport information days in Newcastle**(October 2022)
**and Cardiff**(April 2023):|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 8 people living
with Alport Syndrome:
• **A young woman in her 30s**who bought**gym kit**so that while on
dialysis and awaiting transplant, she could continue to exercise at the
gym.
• **A young man, aged 19**who, despite his kidney function declining,
learnt to be a ski instructor and bought**a ski jacket**.
• **An Aunt**to buy a**bike and bike helmet**for her nephew when he was
newly diagnosed with Alport Syndrome.
• **A young woman in her 20s**who got a grant to pay for a**gym**
**subscription**.
• **A woman**got a grant for her husband to get a**gym subscription.**
• **A mother of two**got three different grants for herself (half her annual
**gym subscription**) and her two boys to buy kit for their different
activities:**climbing kit**and**drama lessons**.
**Key support network achievements this year**
**Delivered two Alport information days in Newcastle**(October 2022)
**and Cardiff**(April 2023):| |---|---|---| |**Participant**
**numbers**|**Newcastle, October**
**2022**|**Cardiff, April 2023**| |Adults|13|29| |Young adults|8|16| |Older children and
teens,12+|0|1| |Younger children, 0-
11|6|13| |Total|27|59| |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||| **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 23 Section D Achievements and erformance p children get their questions answered and they have the opportunity to connect and meet with others impacted by Alport Syndrome. **Feedback on Newcastle Alport Information Day** – October 2022 Feedback on the Newcastle information day by Lolah, aged 10 People at the Newcastle information day watching Sam Clarke’s filmed stories of _Living with Alport Syndrome_ . These stories are a key feature at the workshop. The young adults, many going through dialysis or transplants, are on hand to answer questions posed by newly diagnosed individuals or families. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 24 Section D Achievements and erformance p Alport experts Professor John Sayer, Susie Gear and Professor Neil Turner are on hand to answer questions, Newcastle 2022 When asked to comment on the value of the weekend in Newcastle to family and friends, the people living with Alport Syndrome commented: _“The workshop was extremely valuable to us as a family, increasing our understanding, especially of genetics and treatment options. It was such an encouragement to meet others with Alport Syndrome, and really exciting to be a part of John Sayer's research.”_ _“Found out important information about alports. Makes me feel like there's hope for the future”_ Information day organiser _: “It is heartwarming to see the transition of people’s body language over the day. As they arrive, they are hesitant, don’t want to engage and parents worry about their children and husbands/wives/partners/friends hold onto each other very tight. By the end of the day, the kids all made new friends, created Lego models and the adults visibly relax as they watch their children have fun. The young adults and adults also then relax enough to engage and start asking questions, raise topics they’d like to hear more about and the whole day becomes more interactive and they share stories that benefit everyone and help them also feel less alone on their journey. The young adults are particularly helpful leading on this. They are such an inspiration to us.”_ ## **Feedback on Cardiff Alport Information day** – April 2022 When asked to comment on the value of the weekend in Cardiff to family and friends, the people living with Alport Syndrome commented: _“Priceless! We have been provided something we have been seeking for so many years.”_ _“It was really informative and supportive. I feel empowered having attended.”_ _“Great weekend to be able to connect with people that understand and connect on a whole different level.”_ _“This weekend has taught me more about -Alports than my renal team ever did. I found the information to be invaluable and something I can now apply to my life going forward. Even though I’m probably further than_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 25 Section D Achievements and erformance p Mychel Morais, a laboratory scientist, talking to patients about the progress in the Alport Research Hub based in Manchester A passing ice cream van was spotted and a very thoughtful patient paid for ice creams for all – members of the Alport Avengers group enjoying theirs _most people in terms of the kidney dialysis and transplantation journey, I felt extremely new when learning about Alports. The patients different experiences with it and the possibility of potentially avoiding dialysis and transplantation in future alport patients is amazing.”_ _“Spending time with other people who understand is priceless, it provides hope and reassurance, especially important for those newly diagnosed/ with young children._ _Having the opportunity to speak to medical professionals in such a relaxed environment is fantastic and really enables you to ask questions and then liaise with your own medical team about the latest research etc.”_ _“Great to meet fellow patients and be part of the Alport Family.” “It was so valuable to meet others, share stories, feel less alone, and for our children to make friends with others in similar situations.”_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 26 Section D Achievements and erformance p Confidence-building workshops engaged the young people in an afternoon of fun activities Grateful thanks to Pippa and Mark, the local team, who found the great venue looking out over Cardiff bay! **alport uk’s private Facebook page - Alport Warriors** - provides support to a group that increased to over 995 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 and 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. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 27 ## Section D Achievements and erformance p 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: **Parent of one young Alport patient facing transplant** who we connected up with another young person who recently had a transplant: _“Thank you. We have seen a big change in our son since he started talking about his worries.”_ **Young Czech patient needing a transplant who is a member of Alport Avengers:** _I know it does seem daunting although I’ve found it helpful to hear what others are experiencing as I know what to expect.”_ We arranged the second and third social events in Newcastle and Cardiff for the Alport Avengers to meet in person which they found incredibly valuable, particularly after the past couple of years’ Covid limitations. They spent time variously talking, sightseeing and getting to know each other and, importantly, sharing experiences of Alport Syndrome. Margherita Venturini, an Italian medical student and Alport patient studying in Cardiff, joined the Alport Information Day in Cardiff (April 2023) shared some of her experiences of living with Alport The feedback we had from the Alport Avengers at Newcastle included: **Young adult man:** _“Understanding the science and what's really going on has been incredibly valuable... whether I fully understand the science or not though, just meeting others has made me feel a lot less isolated living with the condition. Knowledge about the science and mechanisms of Alport's has also helped me to realise that there is no-one to blame for this condition... it allows me to release the inward and often self-afflicted_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 28 Section D Achievements and erformance p Young adult group participating in a confidence building workshop in at the Cardiff Alport Information Day _negativity towards myself by knowing that mutations are a natural occurance in humans... acceptance brings gratitude.”_ **Young adult woman:** _“Honestly priceless, I can’t explain how connected this makes me feel to others and the hope it gives me is just beyond words. Genuinely thank you.”_ We continued the dissemination of information and support for both patients and carers, including: - **Answering enquiries emailed to alport uk** at info@alportuk.org and phone calls sent to our landline number of 01793 847264 and putting people in touch with experts to answer their questions, writing letters to support children’s needs at school or putting people in touch with other families to share stories and experiences. Feedback from a woman who was struggling to get support at school for her son: _“The report was so so helpful! Everyone asked to read it. And I think everyone in the room suddenly gathered a greater understanding. Thank you to you and the whole team who contributed.”_ - **Sending out information electronically** – there was a high number of enquiries about information for women and girls living with Alport Syndrome, about hearing and about whether taking Flozins which seem to show signs of prolong the life of kidneys, affording patients valuable time prior to transplant. ## **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 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, increase the advice and information to enable people to stay as calm as possible during the pandemic, including sourcing food banks and writing letters to employers **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 29 Section D Achievements and erformance p 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 at what continued to be a very concerning time long after the pandemic finished. As mentioned above in ‘Support’ above, the **Alport Avengers** group (1835 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.” With this young adult group, as the most critical group facing declining kidney function just at the time they are trying to leave home, build careers etc, their feedback increasingly indicates that short videos are the most useful way of sharing information. We now use short videos to explain Alport Syndrome and to share patient stories. Our most shared videos include four filmed and produced for alport uk by filmmaker, Sam Clarke who is also a young person living with Alport Syndrome: - **My Only Antidote:** Sam Clarke, cycled round Europe raising funds for people living with Alport Syndrome and filming his experiences: https://youtu.be/4vRuYBn6St4. We use this video for newly diagnosed patients as it explains the real challenges of living with Alport Syndrome. Sam also ably inspires patients with the fun activities that he does such as sky diving, cycling and generally having fun. These are such an important messages for young patients. - Sam also helps alportuk by filming a **series of 2-3-minute documentaries about Living with Alport Syndrome** . These short films document the highs and lows of living with Alport Syndrome. The films are invaluable communication materials that engage the wider community in what it is really like to live with Alport Syndrome. We are very grateful to the following people that Sam filmed about their journeys and living with Alport Syndrome: **Katie Brown** - https://youtu.be/DJTKNLWQfmo **Lesley Forrest** - https://youtu.be/RoDWE-8Ck60 **Jospeh McLean** - https://youtu.be/4bz5-tK6m6w. - **Patients inspire Alport Syndrome research,** a collaboration between alport uk and University of Manchester: = - https://www.youtube.com/watch?v 77p7nzKz6nc - • **Highlights from The 2019 International workshop on Alport Syndrome** , Siena, October 2019: https://youtu.be/QH8mDTmKaVU - **Highlights of Podocyte 2021** , a film made by young patients who have podocyte-related kidney conditions, Manchester, July 2021: - - https://youtu.be/3 ZDm2CR8Ow - **Highlights from The 2022 International workshop on Alport Syndrome** , Calgary, Canada, September 2023. - We are very grateful to patient Sam Clarke for making these upbeat and **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 30 Section D Achievements and erformance p very professional videos. 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 being told about a ‘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: - Why Alport research is important https://youtu.be/TU0m6qGvTFY - = - Alport Community https://www.youtube.com/watch?v 5gJEtmhcClU - Alport Syndrome: Know your numbers - = - https://www.youtube.com/watch?v jtkmJdwG0nE - • Kidney transplants and Alport Syndrome https://www.youtube.com/watch?v=Gd4yB9PVnM0&t=52s - Update on clinical trials and potential treatments for Alport Syndrome (written in English and translated into Italian, German and Chinese by 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 Guy’s Hospital 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: - **A summary leaflet for Alport UK** to encourage people to get in touch with us – this is now handed out at the genetics units when people are newly diagnosed with Alport Syndrome. It was also sent out, along with laminated posters with our contact details on, to all the main adult and children’s kidney units around the country to advertise where to find out information about Alport Syndrome - **A dictionary of scientific terms** to help patients learn more about the biology of Alport Syndrome, so when their clinicians explain things, they understand a bit more about what they are talking about as it is so hard to pick much up in a short clinic appointment. - • **Definitions of related rare renal diseases** – Nephrotic Syndrome, **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 31 |Section D|Achievements andperformance| |---|---| ||IgA Nephropathy, Membranous Nephropathy and Focal Segmental
Glomerular Sclerosis (FSGS) that sometimes overlap with Alport
Syndrome or people can be diagnosed with more than one disease or
if people are misdiagnosed.
•
**Videos available through our website**(www.alportuk.org), on our
YouTube @alportuk channel, and a special section on Alport
Syndrome on www.healthtalk.org (http://www.healthtalk.org/peoples-
experiences/long-term-conditions/alport-syndrome/topics ) of our key
experts talking about specific aspects of Alport Syndrome. Topics are
varied about all aspects of living with Alport Syndrome and include:
Genetics, An introduction to Alport Syndrome, Hearing and hearing
aids, caring for people with Alport Syndrome, medication, women with
Alport Syndrome etc.
•
**Our website remains an invaluable resource**. We are currently
fundraising to improve our information on the internet. We intend to
update www.alportuk.org to make the information clearer and more
accessible and to answer the questions we have received over the
last few years or so through our closed Facebook page, Alport
Warriors. The plan is to collaborate with the other national patient
organisations and provide an international website for the most up-to-
date information, research papers and clinical guidelines. We need to
establish what information is critical to hold and update at the
international level (eg simple explanations of Alport Syndrome,
clinical guidelines etc) and what is specific to a national community,
such as how to navigate the NHS in the UK to access treatment. This
project will mean we will updatewww.alportuk.orgso as not to
duplicate resources.
•
**Information about new clinical trials**that patients can sign up to is
shared through our website ‘Latest news’ section, through our closed
Facebook page (Alport Warriors) and through directly emailing our
database of patients. alport uk specifically do not recommend any
trials, but signpost people to the most up to date information and
encourage them to discuss it with their own clinicians who can
discuss the relevance of the trial with them, knowing their personal
situation.
**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**
**six international workshops, the clinicians and laboratory scientists**
**featured 370 new research projects. Many went on to publish their**
**findings in international journals**.
Alport UK is closely involved in an exciting new research development –
the**Stoneygate Trust and Kidney Research UK Alport Research Hub**.
The hub is directed by**Professor Rachel Lennon**from the University of
Manchester, in collaboration with**Professor Daniel Gale**from University| **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 32 Section D Achievements and erformance p 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. The most recent workshop was about **Clinical Trials and how to read your genetic test** and featured **Professors Danny Gale** (UK), **Frances Flinter** (UK) and **Judy Savige** (Australia). With a new clinical trial upcoming that was for a drug that potentially could treat a specific type of genetic variant, it was important to educate the community to help people living with Alport Syndrome interpret their genetic test and understand whether they are eligible for a trial with specific genetic requirements or not. From top left clockwise: Professor Frances Flinter, Patrick Walker, Professor Judy Savige, Professor Danny Gale running the Alport online workshop about Clinical trials. The workshops feature scientists from all over the world. **From a patient who attended the Hearing workshop** : ‘ _So good to hear this subject properly discussed, thanks all’._ We enjoyed the patient’s sense of humour in the feedback! Jokes aside, this was the first time our community focused on hearing in detail – both the physiology and understanding research looking at the performance of the ear particularly. The plan is to do more on hearing and eyes as these are topics requested by patients again and again – the fear of losing hearing and eyesight ie going deaf and blind understandably concerns people (and unnecessarily as they can have hearing aids or treatments to transform the symptoms) when they are first diagnosed with Alport Syndrome. alport uk always encourage recently diagnosed people to find out more about the Alport implications and aim to help them realise that the **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 33 Section D Achievements and erformance p Feedback from participants using a Wordcloud at the end of the Clinical trials Alport online workshop. symptoms are very varied on a spectrum of mild to severe so there are different symptoms for different people, potentially dependent on their genetic variant of the Alport gene and any genetic modifying genes involved. Largely the hearing loss associated with Alport Syndrome is partial hearing loss that can be helped with hearing aids for the majority of patients. The eye abnormalities are also on a spectrum and require an eye test at Moorfields to understand the severity; symptoms are also potentially dependent on the genetic variant of Alports. We also know the eye symptoms can also be alleviated with simple treatments or extend to lens replacement therapy – like a cataract operation – that transform what appears to be increasing ‘blindness’ for patients. This information is vital to share with patients – that they can do something about the eye complications. So, we provide this information through the online workshops, and then post links to the workshops on the closed Facebook page and via social media to save people suffering unnecessarily. The first part of the year focused on the organisation and delivery **The 2022 International workshop on Alport Syndrome** in Calgary, Canada. The hybrid workshop took place as a one day, pre-congress workshop to the 19[th] congress of the International Society of Pediatric Neprhology (IPNA). This was the first in-person event after Covid and it suited the needs of the potential mixed audience of patients, clinicians, research scientists and pharmaceutical companies. The workshops are put on to grow the Alport Syndrome Alliance – a powerful and growing collaborative network advancing treatments and knowledge for Alport syndrome. The network includes people living with Alport syndrome, clinicians, researchers and pharmaceutical companies. As a founding member of the Alport Syndrome Alliance, alport uk chair the international Workshop Organising Committee meetings to develop the agenda, organise the logistics and raise the funding for the workshops. **The Calgary workshop was a hybrid meeting, with 171 participants from 28 countries: Australia, Belgium, Brazil, Canada, China, Croatia, Cyprus, France, Germany, Greece, India, Ireland, Italy, Indonesia, Israel, Lithuania, New Zealand, Nigeria, Poland, Russia, Spain, Singapore, Sweden, The Netherlands, Turkey, UK, USA. This included 90 participants in person and 81 participants online and also included 90 patients from 18 countries and 7 young adults.** All the patients participated free of charge. Disappointingly, there was not time in the agenda to feature presentations about individual research projects. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 34 Section D Achievements and erformance p Participants feedback when asked to summarise their perspectives on the workshop and the value to them or their work, for example: Clinician (Nigeria): “Awesome platform for engagement and international collaboration.” Laboratory Scientist (USA): “Gave me new ideas to pursue in the laboratory.” Pathologist (Croatia): “Very good! Please continue this beautiful collaboration of different specialities and patients.” Clinician (Italy): “It helped me to update my knowledge on when to order a genetic test and the actual clinical trials ongoing.” Patient family (USA): “My experience at the Alport International Workshop in Calgary was remarkable. Not only did I get to meet and greet with the most knowledgeable Alport clinicians in the world, I also got to hear the latest science, trials, and pharmaceutical interests in addressing Alport. Lastly, the experience of meeting other Alport patients was an emotional and deeply bonding experience. I am so glad I came and am looking forward to continuing to be a part of this community.” “I am a clinician, (genetics). I found this added somewhat to my knowledge of treatment options for families and what might be coming in the research pipeline. It is helpful to know of this organization to direct families to.” “I am a newly diagnosed patient and patient parent [from Europe]. The updates on treatment guidelines were directly useful as I communicate with my physicians and advocate for my care. Presentations on research, such as gene therapy for hearing loss gave me so much hope for my son's future.” Clinician (South Korea): “Eye-opening experience as a pediatrician. Thank you so much.” After their presentations – either at an online workshop or at The 2022 International workshop on Alport Syndrome, a number of the researchers fed back stories to alport uk about how the workshops ‘furthered their science’. Presenting researchers confirmed that members of the Zoom or in-person audiences at their workshop reached out to them via email to: • set up new collaborations • initiate new collaborative research projects and • provide vital new input to current projects. The online workshop format was a catalyst for new research, thanks to the pandemic and the inspiration of the team who devised the format: **Professor Rachel Lennon, Professor Jeffrey Miner, and two members of the Lennon lab - Louise Hopkinson and Richard Naylor** . alport uk is incredibly grateful particularly to Louise and Richard, who worked from home whilst unable to get into the lab, and helped us identify new research to feature, created material to post on social media, participated in the discussions and helped ‘translate’ some the difficult terms into a dictionary of layman’s terms to make the science more accessible for patients with no science background. ## Feedback from patients: _“It was so enlightening to find out these people (the researchers) are doing their very best on our behalf. I had no idea of the methods used for this kind of research. They seemed to be a happy team too!”_ _“It was reassuring that such research is carrying on.” “Fantastic idea and I'm sure the rest of the Alport community would be_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 35 Section D Achievements and erformance p _very interested in seeing this. I did not have a clue so much was going on and to hear all the info has made me feel very hopeful. Many thanks again”_ **From a patient advocacy person** : _“…congratulations for the Alport workshops. It is a fantastic way to keep connected and continue learning about Alport Syndrome.”_ After each workshop, we invite people to submit one word to express how they feel after a workshop. For example: ## **Feedback from a Hearing workshop:** **Patient: ‘** I found this so interesting as I have hearing loss myself - thank you all.’ **Feedback from the Spotlight on Jie Ding’s lab, based in Beijing, workshop:** ## **Feedback from Chat and emails:** _‘Really helpful to see an example of a variant being demonstrated to be benign. Otherwise, it is so easy to make an incorrect diagnosis.’_ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 36 Section D Achievements and erformance p **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 - • New research ideas and projects to develop new treatments and therapies and more research generally - Ways to reengage the leading experts in Alport Syndrome - Co-ordination of national patient registries - The need to engage the pharmaceutical industry in developing new treatments - How alport uk could complement the current contributions of other national patient organisations, for example the Alport Syndrome Foundation who currently run an excellent programme of seed funding for Alport research, commissioning projects each year - How Alport Syndrome is a model renal disease and that new treatments developed for Alport Syndrome could help other patients living with kidney disease. 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: - 242 new research projects featured at four international workshops - 131 publications with the majority in international journals - • 18 book chapters - 38 major grants to fund the ongoing research. - 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.** Ie 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. 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 started work on a seventh workshop in the series: **The 2024 International Workshop for Alport Syndrome to be held in Cyprus** . The aim is to make this seventh workshop in the series an inperson 3-day workshop (as they had not really been all together since 2019) to refresh the Alport Syndrome Alliance’s global network with their shared aim to advance treatments and knowledge and make sure it was as accessible to patients, clinicians, early career researchers and pharma alike. The planning started in earnest over the summer to get the **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 37 Section D Achievements and erformance p workshop programme ready for a week-long workshop planned for 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. ## **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 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: - Promoting the importance of RaDaR to patients at Alport information days, along with information about the value of RaDaR to research. - Making the research registry a central part of the national contribution to international efforts to collaborate on research coming out of the 2014, 2015, 2017, 2019, 2021 and 2022 International Workshops on Alport Syndrome and proposing to for there to be significant topics on it at the 2024 workshop. - Supporting the enrichment of data as part of the programme of the Alport Research Hub, including chasing up the transfer of historical genetic data that transferred from Guy’s Hospital to the Bristol genetic testing labs when they took on the testing service. - Continuing the development of the UK’s contribution to an international alliance of Alport Syndrome research. An ‘alliance’ is necessary as long-term there are not enough patients in the UK for Clinical trials and so pharmaceutical companies will want to do trials in a number of different countries to try new therapies. alport uk enlisted the help of designer Robina Newman to develop the branding for the Alport Syndrome Alliance and apply it to a new website built by Alice Cooper to simplify the registration process for participants for The 2021 and 2022 International workshops on Alport Syndrome. The plans for the 2024 international workshop planned for March 2024 (in the next financial year) are to double the number of participants, compared with previous years, applying to join the international workshop and with the encouragement of other national patient organisations, especially across Europe to build the Alport Syndrome Alliance to help the Alport community act as one global network focused on advancing treatments and knowledge, with one voice. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 38 Section D Achievements and erformance p 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. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 39 ## **Section E Financial review** ## **Brief statement of the charity’s policy on reserves Details of any funds materially in deficit** - Reserves from fundraising are kept in separate Barclays bank savings accounts, labelled for their specific use and to make sure restricted and unrestricted funds are used appropriately. For example, for: - **Information days** (Alport UK Meetings) - **UK Development of information, website and marketing material** (Alport UK) - - **Facilitating the International Workshops on Alport Syndrome** (Alport UK Research) - - **Supporting patients take up a new sport or activity** (Don’t Wait Fund) No funds in deficit ## **Further financial review details (Optional information)** - alport uk’s principal sources of funds this year were, despite the - You **may choose** to include pandemic, again more diverse than in the previous year: - additional information, where - Personal donations – limited this year - relevant about: - Personal fund-raising activities such as sports activities such as the - • the charity’s principal KiltWalk in Scotland. sources of funds (including - Just Giving and Virgin Money Giving pages of sponsorship for various any fundraising); activities that our community get involved in to raise funds for alport - • how expenditure has uk – this year Sam Clarke’s amazing efforts increased the money raised to over £20,000 for a new fund we will call the ‘Don’t Wait - supported the key objectives Fund’ to support patients taking up a new sport or hobby. - of the charity; - Social media fundraising pages eg Facebook giving for birthdays - • investment policy and - PayPal and Amazon payments/donations to Alport UK objectives including any - Sales of Christmas cards and a wider variety of merchandise such as ethical investment policy hoodies, t-shirts, water bottles etc adopted. - Standing orders from a couple of very supportive patient families - Customised shaking tins located in retail venues - Donations from larger charities or foundations for specific activities and particular thanks to **Kidney Care UK, Kidney Research UK, the Amelia Chadwick Trust, Kidney Wales, Popham Kidney Support, Kidney Foundation of Canada** . - - Donations from **The Worshipful Company of Dyers** . With thanks to Alice and Sebastian Cooper. - Grants given by a number of pharmaceutical companies: alport uk are very grateful to the support from **Calliditas, Eloxx, Sanofi** and **Travere** . 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 **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 40 ## Alport UK Report and Financial Statement For the year ended 31[st] July 2023 Charity number: 1154774 Shilton Accounting Services 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 41 ## **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: 9 Bagpath Tetbury Gloucestershire GL8 8YG Trustees: Colin Baigent Jules Skelding Susie Gear Frances Flinter Rachel Lennon Accountants: Shilton Accounting Services Certified Practising Accountants 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 42 ## **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 2023 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. - It is my responsibility to: - a) Examine the accounts (under section 43(7)(b) of the Act. - b) To follow the procedures laid down in the General Directions given by the Charity Commissioners (under section 43(7)(b) of the Act. - c) To state whether particular matters have come to my attention. ## **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 Honeystone Cottage Ladburn Lane Shilton OX18 4AJ **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 43 ## **Alport UK Charity number: 1154774** ## **Director’s report for the year ended 31[st] July 2023** The trustees present their report and financial statement for the year ended 31[st] July 2023. **Objects** – The relief of sickness and the promotion of health of those people suffering from Alport Syndrome, in particular, but not exclusively by: - a) The establishment and facilitation of a support network for Alport Syndrome patients, carriers, their families and carers; - b) The provision of information on Alport Syndrome; - c) The support of research into Alport Syndrome both in the UK and internationally; - d) The support of a research registry in the UK and an international alliance of national registers. **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 fund further research and to strengthen its support structure. This report was approved by the Trustees on 31 July 2024 and signed on its behalf by ## **Susie Gear** **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 44 ## **Alport UK Charity number 115774** ## **Statement of Financial Activities (including Income & expenditure Account) For the year ended 31[st] July 2023** ||Restricted|Unrestricted|Total|2022| |---|---|---|---|---| |**Income**||||| |Donations/Sponsors|
24,075|62,985|87,060|56,187| |Delegate fees|2,741|270|3,011|11,330| |Fundraising/merchandi|s|2,119|2,119|1,981| |**Total Income**|**26,816**|**65,374**|**92,190**|**69,498**| |||||| |**Expenditure**||||| |Employee costs|30,204|37|30,241|29,720| |Bank & service charg|e|70|70|321| |Direct Events costs|6,874|2,349|9,223|5,400| |Branded goods||||1,800| |Administration||2,700|2,700|850| |Travel & subsistence|
14,569|22,897|37,466|13,658| |Internet/website||4,493|4,493|1,481| |Marketing|1,511|2,292|3,803|7,645| |Insurance||710|710|700| |Subscriptions||1,807|1,807|2,067| |Bursaries/grants|1,022|1.035|2,057|279| |Others||||5,021| |Accountants fees||1,288|1,288|1,420| |**Total Expenditure**|**54,180**|**39,678**|**93,858**|**70,362**| |||||| |**Net movement**|(27,364)|25,696|(1,668)|(864)| |||||| |**Transfers**|30,873|(30,873)|0|| |||||| |**Opening Balance**|22,815|26,552|49,367|50,231| |||||| |**Closing Balance**|**26,324**|**21,375**|**47,699**|**49,367**| There are no recognised gains or losses other than in the Statement of Financial Activity. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 45 ## **Alport UK Charity number 115774** ## **Balance Sheet as at 31[st] July 2023** ||**Notes**|**2023**|**2022**| |---|---|---|---| |||**£**|**£**| |**Fixed assets**||**3,075**|**-**| ||||| |**Current assets**|||| |_Cash at bank_|**4**|**47,048**|**51.751**| ||||| |**Total Current assets**||**47,048**|**51,751**| ||||| |**Current liabilities**|||| |_Creditors falling due within 1 year_|**5**|2,424|2,384| ||||| |**Net current assets**||**44,624**|**49,367**| ||||| |**Assets less liabilities**||**47,699**|**49,367**| ||||| |**Represented by**|||| |_Restricted funds_||26,324|22,815| |_Unrestricted funds_||21,375|26,552| ||||| |**Total funds**|**6**|**47,699**|**49,367**| ||||| ## **Signed on behalf of the charity’s trustees** ## **Date: 31 July 2024** **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 46 **Alport UK Charity number: 1154774** ## **Notes to the financial statements** **For the year ending 31[st] July 2023.** ## **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. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 47 **Alport UK Charity number: 1154774** ## **Notes to the financial statements** ## **For the year ending 31[st] July 2023.** ## **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. **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 48 ## **Alport UK** ## **Charity number: 1154774** ## **Notes to the financial statements For the year ending 31[st] July 2023.** ## **4. Cash at bank.** |**Cash at bank.**|| |---|---| |Barclays General Account 93696405|15,256| |Barclays Research Account 93725642|8,371| |Barclays Don’t wait Account 33742210|17,953| |Caxton FX|5,458| |Paypal|10| |**Total**|**47,048**| ## **5. Creditors: Amounts falling due within one year** Accounting fee accrual £ ## **6. Movement in funds** ||Opening
balance|Incoming
resources|Outgoing
resources|Balance
31stJuly 2023| |---|---|---|---|---| |Restricted|£22,815|57,689|54,180|26,324| |Unrestricted|£26,552|65,374|70,551|21,375| |**Total**|**£49,367**|**123,063**|**124,731**|**47,699**| **Annual report up to 310723 310724 Final** Annual report for alport uk to 31 July 2023 49