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2021-08-01-accounts

ANNUAL REPORT AND ACCOUNTS

For the year ended 31 July 2020

Trustees' Annual Report for the period

Period start date Period start date Period end date Period end date
From 1 8 2019 To 31 7 2020

Section A Reference and administration details

Charity name alport uk

Other names charity is known by n/a

Registered charity number (if any) 1154774

PO Box 329 Cirencester Postcode GL7 9JA

Charity's principal address

Names of the charity trustees who manage the charity

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2
3
4
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7		 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

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

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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
Geneticist 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

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)

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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. We have a scientific advisory committee which is available, whenever required, 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. • Information – all the 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, as required. This includes assessing clinical trials and although, as a charity, we never recommend participation in a trial, we will provide as much information as possible to support patients’ decisions on participating in a trial, publishing 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 expenditure is transparent to maintain the open collaborative working environment. To ensure all appropriate risks are managed related to this collaboration, we have set up an international Workshop Organising committee to ensure there is a balance of work and information from or relating to different countries or continents. • 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 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

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

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

Summary of the main Public benefit – statutory declaration by Trustees activities undertaken for the public benefit in relation to The Trustees have paid due regard to the Charity Commission’s these objects (include within guidance on public benefit in deciding what activities the charity should this section the statutory undertake. alport uk recognises and welcomes the need to carry out its declaration that trustees have charitable activities to the benefit of those affected by Alport Syndrome, had regard to the guidance and retains this aim at the centre of its strategic planning. issued by the Charity Commission on public alport uk is a patient-led organisation dedicated to facilitating a benefit) 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://sam-clarke.com/fighting-failure-challenge/. 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:

alport UK fund four key areas of activity

  1. Support – Providing support for UK patients and families through a support network, website and information days.

  2. Information – Working with clinicians, individuals and families to educate them on more effective diagnosis and treatment, for example national guidelines for diagnosis, treatment and the best care for children, teenagers and adults.

  3. Research – Working with other national patient organisations (eg USA, across Europe and Asia) and clinicians to design, develop and maintain an international research strategy and plan for Alport Syndrome, supported by an alliance of national patient organisations and national patient registries

  4. Collaboration – Bringing together the scientific community to work

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across the different clinical disciplines that specialise in kidneys, ears, eyes, mental health, other rare disease areas with similar issues etc. and working with the national patient organisations or other rare renal 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 the possible 2-3,000 individuals impacted in the UK is a small group if looked at on their own, this requires the charity 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 10,000 or 100,000 patients in countries such as USA and China.

Additional details of objectives and activities (Optional information)

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You may choose to include further statements, where relevant, about:

Contribution by volunteers

alport uk mostly relied on voluntary help to run the activities over this period as for the previous seven years. Our community often reflect and remark 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 volunteers for this remarkable progress, especially for the many contributions from the following key and very motivated people:

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We wish to thank our Scientific Advisory Committee for fitting in so much time this year particularly to advise us on how to support the community as the pandemic took 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. This amazing contribution was also having already given us a lot of their time in the previous year helping us prepare for and deliver The 2019 International Workshop on Alport Syndrome (which took place in Siena Italy 22-24 October 2019). We are so very grateful to the scientific community for their help to answer all questions and emails as and when they arose from patients or other scientists . Very many thanks to our UK Scientific Advisory Group:

Alport online workshops – during the pandemic, we were overwhelmed with additional help from people who chose to volunteer for alport uk whilst stuck at home unable to work or go into the lab. A small working group of volunteers was formed which included: Rebecca Moule and Harriet Carter (who both volunteered for us whilst on furlough ), Susie Gear, Louise Hopkinson, Professor Rachel Lennon, Professor Jeffrey Miner, Sophie Emler and Richard Naylor . We are so grateful for the quick thinking and inspiration from this group who together came up with the idea of runnning a series of Alport online workshops , 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 and special thanks to Sandra Currie for quickly realising the value of the opportunity for patients.

We are so grateful to the amazing team – all volunteers - who helped us run and deliver The 2019 International workshop on Alport Syndrome in Siena, Italy:

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We wish to thank the Workshop Organising Committee (see list below) for helping us to design and deliver The 2019 International Workshop on Alport Syndrome . We are also grateful to our colleagues who run some of the other national patient organisations, such as Andre Weinstock (Alport Syndrome Foundation, USA), Jacqueline van Kempen (The Netherlands), Maria José Cacharron (Spain) and Daniela Lai (Italy), Jessie Zhang and Mr Cai (China), Christof Finkler and Ute Rosenthal (Germany), Dave Blatt (Australia).

Workshop Organising Committee for The 2019 International workshop on Alport Syndrome: Professor Colin Baigent, MRC Scientist, Hon Consultant in Public Health, Oxford, UK 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, Consultant in Clinical Genetics, Guy’s Hospital, London, UK Professor Daniel Gale, UCL Centre for Nephrology, London, UK Professor Oliver Gross, Department of Nephrology and Rheumatology, Georg-August-Universität Göttingen, Germany Professor Clifford Kashtan, Department of Pediatrics, University of Minnesota, USA Professor Bertrand Knebelman, Necker Hospital, Paris, France Professor Rachel Lennon, Wellcome Trust Centre for Cell-Matrix Research, University of Manchester, UK Associate Professor Julian Midgley, Department of Paediatrics, Alberta Children’s Hospital, Canada Professor Jeffrey Miner, Washington University in St. Louis, USA Dr Laura Perin, Saban Research Institute, University of Southern California, USA Professor Judith Savige, University of Melbourne, Australia 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 Roser Torra, Fundació Puigvert, Barcelona, Spain Professor Neil Turner, Professor of Nephrology, University of Edinburgh and Consultant Nephrologist, Royal Infirmary of Edinburgh, UK. Patient representatives: Dave Blatt, Alport Foundation of Australia Maria José Cacharron, Spain Susie Gear, alport uk Andre Weinstock, Alport Syndrome Foundation, USA Daniela Lai, A.S.A.L., Associazione Sindrome di Alport, Italy Julia Schifter, Alport Foundation Israel Christof Finkler, Alport Selbsthilfe, Germany Jessie Zhang and Mr Cai, Chinese patient group, China.

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We also very much value the funding and support of a number of important organisations and charities:

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

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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 is the main ingredient for all the support we offer – we aim to inspire and encourage people living with Alport Syndrome to be optimistic and understand there can be a brighter future.

Measuring our performance and listening to patient feedback on what works and adjusting what we do is vital: Parents with a young daughter recently diagnosed with Alport Syndrome : “…always hugely impressed with you and the team for effort, organization, enthusiasm, info, results etc – well done it is so appreciated by us all out in the Alport community!”

The philosophy that underpins our performance

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

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

Supporting a rare disease that impacts 1 in 10,000 in a population is a challenge as there are few people who have it, who want to research it or fund it. So as a charity we 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

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stakeholders around the world. Some examples of the principles that guide what we do in five key areas of our 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. 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’s grant system. alport uk also writes letters of support for researchers to facilitate grant applications for Alport research.

  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 short videos, social media and engaging activities to enable the patient community to engage in formats and content they find valuable . For example, we encourage young adults to become our ‘media team’ at events, to engage in content, choose what is important and create videos and social media content themselves. See the video patients created about clinical trials and new treatments: https://youtu.be/JRsJtUu8Lh8. This was translated into 3 other languages by the patients working together on the script. We also publish scientific information in the appropriate international journals so that it 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, we facilitate the international research community coming together to share and exchange ideas through a series of in person and online international workshops . 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 activities of our colleagues in organisations such as:

  4. 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.

  5. Alport Syndrome Foundation in the USA – who raise money to provide vital ‘seed funding’ for Alport research at an early stage of development.

  6. 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 Renal Association’s initiative designed to pull together information from patients with certain rare kidney diseases - alport uk support this vital project by encouraging patients, clinicians and renal units to upload long-term clinical data into this database to enable

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Highlights: achievements and performance this year

The pandemic: an opportunity to connect and engage

The second half of alport uk’s financial year was particularly challenging as the pandemic hit the world in early 2020. Vulnerable kidney transplant or dialysis patients and many Alport patients were advised to shield at home and the closed Facebook community – Alport Warriors - doubled in size from 350 members to over 750 members with members joining from all over the world, trusting and appreciating the excellent advice we get from our colleagues in the NHS. Each year we are contacted by more and more people as they are diagnosed with Alport Syndrome. This year, we had double the number of people contacting us for advice and specifically relating to COVID and the impact on renal patients. As we work as a ‘virtual’ organisation anyway, alport uk was able to easily respond to this 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 so 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.

Support network proactively increased during the pandemic

As many Alport patients were asked to urgently isolate in March 2020 due to COVID, ahead of the UK population understanding what was going on, our support activities dramatically changed. We were very

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grateful to our Alport colleagues in China (Professor Jie Ding particularly) and Professor Colin Baigent who warned us of the emerging situation in Wuhan and helped us be ahead of the questions as they arose from the community. This set us up to be proactive in our advice for people living with Alport Syndrome, and was invaluable in keeping the community as calm as possible through a very worrying few months.

Before the charity existed in 2013, with Alport Syndrome affecting 1 in 10,000 people, it was typical that a family diagnosed with Alport Syndrome would never have met or talked 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 National Alport Information Days, our web site and closed Facebook page, 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 early unknown stages of the pandemic.

Young woman in her 20s with a young daughter, both impacted by Alport Syndrome and mother needing a transplant urgently , commenting about young adult workshop: “It was really good to not feel so alone.”

Young male patient from Georgia with no support locally , but joins the online workshops to understand more about Alport Syndrome: “Thank you so much. Really appreciate what you guys are doing.”

Some of the key support network achievements over the year:

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Manchester (2019) for both patients and carers, including:

Provision of information

With the help of our scientific advisors, we got advice early as the pandemic emerged and were able to keep one step ahead of the barrage of questions with daily posts on our closed Facebook page – Alport Warriors - to the community to answer queries as they arose. We posted the same information on the Alport Syndrome Foundation’s USA Facebook page in parallel as they have a number of UK patients as members. The USA Facebook page admins were incredibly supportive and we worked together to make sure that the international community benefited from the practical advice we got from our scientific advisors. This timely information reduced the anxiety in the community at a very challenging time. As everyone’s circumstances were different, we provided specific information to help patients work out their own risk levels and the necessary personal actions they needed to take to protect themselves from the virus. This built-up personal confidence and resilience as people took control of their own situations. This approach informing people to enable them to take control and build resilience was vital as our community has so many differing needs, many different age groups, are in differing stages of renal failure, undergoing different types of renal replacement therapy and many patients and family member were also from other countries seeking what advice they could get. We are very proud of the alport uk team, how they anticipated queries, increased the advice and information to enable people to stay as calm as possible, including sourcing food banks and writing letters to employers to explain the needs of their employees with Alport Syndrome. We are incredibly proud of the patients, their positive and pragmatic approaches to looking after themselves and helping each other across the community at a very concerning time.

Sometimes it was most helpful to connect young people to mentor each other when facing particularly challenging times such as declining kidney

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failure and transplants: 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 Alport patient needing a transplant: “I think it's not actually as bad as it sounds to be fair…it really helped for me to understand what exactly actually goes on” During the pandemic, with most of our community – individuals and families living with Alport Syndrome and all the Alport researchers – isolating or working in their homes, we created Alport Online Workshops, a series of online workshops featuring topics impacting patients and the latest Alport research from all over the world: https://tinyurl.com/y9cuhgby . The first workshop was about COVID and the impact on kidney patients. The online audience was over 70 people, but the video was put onto YouTube after and received over 450 views. Subsequent workshop topics, requested by patients wanting more information, included for example: Alport eyes, Alport genetics and work by lab researchers in Manchester and USA. During the pandemic and various national lockdowns, the Alport online workshop team went on to produce a total of 20 online workshops including a ‘Drop in’ session one evening: Mother with a teenager daughter with Alport Syndrome: “I think it’s lovely just to have coffee type chats over zoom for the Alport Community however many join. Wishing you all at Alport U.K. a lovely weekend after all your hard work, as a family affected by Alport, we very much appreciate it!” With our 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 these short videos to explain Alport Syndrome and share patient stories. Our most shared videos include three filmed and produced for alport uk by filmmaker, Sam Clarke who is also a young person living with Alport Syndrome:

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 . 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. Topics included:

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When someone is diagnosed with Alport Syndrome, some of the regional genetics units e.g. at Guy’s Hospital and some of the paediatric renal 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:

The support of research

With limited funding for research, alport uk’s strategy is use our small amount of funding to facilitate an Alport research collaborative plus support and encouragement for the research community in working together to create a vibrant research community that attracts more researchers and pharmaceutical companies interested in developing new

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treatments. The major programme for the first half of the year was to deliver our fourth ‘in person’ international workshop – The 2019 International workshop on Alport Syndrome in Siena, co-hosted with the Italian national Alport patient association – A.S.A.L. Onlus – and Professor Alessandra Renieri’s wonderful genetics team at Siena University. With participation from patients and scientists all over the world, the Siena workshop focused on genetics and gene therapy and was the largest collaboration to date with the international Alport community delivered entirely by alport uk volunteers in collaboration with the team in Italy – the key achievements are listed below including the collaborative effort on sponsorship to provide the funds to make the workshop possible. A specialist international ‘Alport mutations/variants workshop’ was then held in London in February 2020 for all those involved in lab testing and diagnosing Alport Syndrome around the world to collaborate on and publish international guidelines and clinical standards to improve diagnosis. Professor Judy Savige from Australia lead the effort, with over 50 experts participating in person from all over the world just before the UK went into Lockdown, supported by alport uk. When lockdown happened and with many patients shielding at home and the alport researchers unable to get into the lab, people had time on their hands and we quickly formed a small working group to create a series of Alport online workshops. The first workshop, delivered on 12 May 2020 focused on answering COVID questions and explained the new arrangements for Alport genetic testing as the lab facilities moved from Guy’s in London to Bristol. The workshops were run monthly thereafter with a few extras fitted in on topics people were particularly keen to hear about eg eye complications in Alport syndrome. The workshops featured scientists from all over the world. From a patient advocacy person in another country : “…congratulations for the Alport workshops. It is a fantastic way to keep connected and continue learning about Alport Syndrome.” Over the year: 279 participants from 33 different countries participated in the first 14 online workshops 38 speakers presented 42 of the latest research projects from 8 different countries. 15 moderators contributed from 3 different countries and we aim to increase the diversity for the next set of workshops So far, the videos on YouTube, https://tinyurl.com/y9cuhgby, received 1,786 views. The researcher and clinician participants represented a range of different disciplines: basic science, lab technicians, adult and paediatric nephrology, clinical and laboratory genetics, pathology, ophthalmologists, transplant surgeons, dialysis specialists, academics. Some of the workshops featured specific labs and were an opportunity for early career researchers to present their work to the international Alport community and get feedback and questions. In the spirit of ‘collaboration’ – such an important principle of alport uk’s strategic direction – the pandemic actually enabled us to accelerate our progress, share more research to a wider audience and at a reduced cost compared with the four ‘in person’ workshops delivered previously. The lock-in format of the ‘in person’ workshops meant the community had

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spent plenty of time getting to know each other over the last 6 years and this investment in enabling the community to ‘get to know each other’ and collaborate paid off as we worked online. Busy clinicians, battling to deliver frontline care to patients in hospitals all over the world, still made time to join us online and connect. After their presentations, 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 audience on 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 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” After each workshop, we invite people to submit one word to express how they feel after a workshop. For example: Feedback from the COVID workshop:

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Feedback from the ‘Planning a family’ workshop:

Feedback from the ‘Flozins as a potential treatment’ workshop:

The science to better understand what causes Alport Syndrome is very complicated. The more we know about the genetics, the more complicated it is with modifier genes impacting the Alport genes creating a vast range of phenotypes. Much of the science was daunting for some patients and the patients provided valuable input to the workshop programme planning for the following year to balance the programme with other topics to feature more patient-friendly science relating to transplantation, dialysis, hearing etc.

Alport research indicators in 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:

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In 2019, to check on the performance of our investment to get researchers together through these workshops, alport uk circulated a simple survey with the Workshop Organising Committee members and their research teams (ie not the full Alport research community, just some of the key members) to understand the impact of the international workshops, emphasis on collaboration and how much research is now being done. Overall the numbers indicate a very healthy research community to whom we are incredibly grateful for all they do to help with the awareness and understanding of Alport Syndrome by delivering: • 131 publications with the majority in international journals • 18 book chapters

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research community, alport uk intended to restart the conference calls with the international workshop organising committee to share progress, keep the researchers engaged in delivering the agenda agreed at the workshop and start planning the fifth and sixth workshops in Beijing, China and Calgary, Canada respectively. However, when the pandemic hit and with most of our Workshop Organising Committee being kidney doctors, the doctors were needed on the wards to help with the kidney complications that COVID caused. So, the Alport Online Workshops were started instead and plans started for an Online International workshop for 2021.

Support of a UK research registry

In parallel to alport uk being set up, the Renal Association established a working group on Alport Syndrome, funded jointly by Kidney Research UK and Kidney Care (previously British Kidney Patient Association) to support the development of a national renal registry of patients, called RaDaR which is linked to a system that patients can access, called Renal Patient View. 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. At the time of writing, RaDaR has over 800 patients registered as having Alport Syndrome. alport uk specifically contribute to the support of this UK research registry of patients and an international alliance of patient registries by:

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 and Julia Skelding at info@alportuk.org or call us on 01793 847264.

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Section E Financial review

Brief statement of the charity’s policy on reserves - - UK) - UK Research) - Details of any funds materially No funds in deficit in deficit

Further financial review details (Optional information)

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

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

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

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Alport UK

Report and Financial Statement For the year ended 31[st] July 2020

Charity number: 1154774

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

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Alport UK Charity number: 1154774 Legal and administrative information

Charity name: Alport UK Charity registration number: 1154774 Type of organisation: Charitable Unincorporated Organisation Registered office and business: PO Box 329 Cirencester Gloucestershire GL7 9JA Trustees: Colin Baigent Jules Skelding Daniel Gale Susie Gear Frances Flinter Rachel Lennon Neil Turner Accountants: Shilton Accounting Services Certified Practising Accountants 1[st] Floor, 1 The Clock House Brize Norton Road Carterton OX18 3HN

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Alport UK Charity number: 1154774

Independent Examiner’s report to the Trustees of Alport UK

I report on the accounts of the Charity for the year ended 31[st] July 2020 which are set out below.

Respective responsibilities of trustees and examiner.

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

Basis of independent examiner’s report.

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

Independent examiner’s statement.

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

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

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

David Cuthbertson – ICPA Cert Acc (Open) Shilton Accounting Services Honeystone Cottage Ladburn Lane Shilton OX18 4AJ 30/12/2020

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Alport UK Charity number: 1154774 Director’s report for the year ended 31[st] July 2020

The trustees present their report and financial statement for the year ended 31[st] July 2020.

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

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

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

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

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

Reserves policy – The Trustees are actively trying to build reserves, with a view to being able to fund further research and to strengthen its support structure.

This report was approved by the Trustees on 27 February 2021 and signed on its behalf by

Susie Gear

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Alport UK Charity number 115774

Statement of Financial Activities (including Income & expenditure Account) For the year ended 31[st] July 2020

Restricted Restricted Funds Unrestricted Unrestricted Total 2019
Research Meetings Don’t Wait General Caxton
Income
Donations/ Sponsors 14,030 - - 31,339 8,111 53,480 57,009
Delegate fees 17,060 - - - - 17,060 -
HMRC Gift Aid - - - 402 - 402 2,804
Sale of books etc - - - 164 - 164 254
Exchange differences - - - - 228 228 -
Total income 31,091 - - 31,905 8,339 71,335 60,067
Expenditure
Bank & service charge s
77		 - - 597 9 683 -
Direct cost events 14,340 - - 17,199 13,518 45,057 7,886
Administration 6,281 - - 6,442 - 12,723 4,487
Travel & subsistence 10,662 - - 1,960 1,650 14,272 12,192
Internet/website - - - 2,026 - 2,026 1,408
Marketing - - - 247 - 247 4
Insurance - - - 672 - 672 672
Subscriptions - - - 282 - 282 501
Bursaries/Grants 219 - 255 - - 474 -
Others 219 - - - - 219 216
Governance costs
DBS checks - - - 391 - 391 -
Accountants’fees - - - 960 - 960 960
Total expenditure 31,797 - 255 30,777 15,176 78,005 28,327
Transfers (846) - (29,988) 30,835 - -
Net movement (1,553) - (255) (28,860) 23,998 (6,671) 31,740
Opening balance 10,074 94 2,684
54,364		 - 67,215 35,474
Closing balance 8,521 94 2,429
25,503
23,998
60,544
67,215

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

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Alport UK Charity number 115774

Balance Sheet as at 31[st] July 2020

Notes 2020 2019
£ £
Fixed assets - -
Current assets
Cash at bank 4 62,464 68,175
Total Current assets 5
Current liabilities
Creditors falling due within 1 year 1,920 960
Net current assets 60,544 67,215
Assets less liabilities 60,544 67,125
Represented by
Restricted funds 11,043 12,851
Unrestricted funds 49,501 54,364
Total funds 6 60,544 67,215

Signed on behalf of the charity’s trustees

Date: 27 February 2021

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Alport UK Charity number: 1154774

Notes to the financial statements

For the year ending 31[st] July 2020.

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 for charitable trading activity are accounted for when earned.

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Alport UK Charity number: 1154774

Notes to the financial statements

For the year ending 31[st] July 2020.

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 did not employ any staff in the financial year.

3. Trustee remuneration & related party transactions.

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

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Alport UK

Charity number: 1154774

Notes to the financial statements For the year ending 31[st] July 2020.

4. Cash at bank.

Cash at bank.
Barclays General Account 93696405 £27,423
Barclays Research Account 93725642 £7,149
Barclays Meeting Account 83477436 £94
Barclays Don’t wait Account 33742210 £2,429
Caxton FX £23,998
PayPal £1,371
Total £62,464

5. Creditors: Amounts falling due within one year

Accounting fee accrual £960.00

6. Movement in funds

Opening
balance		 Incoming
resources		 Outgoing
resources		 Balance
31stJuly 2020
Restricted £12,851 £31,091 £32,898 £11,043
Unrestricted £54,364 £40,244 £45,107 £49,501
Total £67,215 £71,335 £78,005 £60,544

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