_About Kawasaki Disease_ About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet **Societi Foundation Annual Report & Accounts** _1 January 2022 - 31 December 2022 Registered charity number 1173755_ Notes to the financial statements Detailed statement of financial _About Kawasaki Disease_ ## _About Kawasaki Disease_ _Kawasaki Disease symptoms_ **----- Start of picture text -----**
Persistent Rash Cracked lips/ Bloodshot Swollen Swollen
fever ‘strawberry’ eyes glands fingers/toes
tongue
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## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ ## Kawasaki Disease is the **leading cause of acquired heart disease in children in the UK.** Children with Kawasaki Disease have much improved chances of a good recovery with timely diagnosis and the correct treatment. Studies show that children treated early have a lower risk of serious heart damage than those treated later. Doctors should aim to diagnose and treat children as soon as possible – at five days of fever or as quickly as practical after that. Research has shown that the risk of heart damage grows with increasing delay. It is a type of vasculitis that mainly affects young children but it can affect people of any age. Its impact can be most serious in the very young, particularly infants. Identified in 1967 in Japan by Dr Tomisaku Kawasaki, the cause of Kawasaki Disease is still unknown. The illness presents with several symptoms common to a variety of other childhood diseases and infections and is therefore often misdiagnosed. Kawasaki Disease is a serious disease which can cause coronary artery damage and life-long heart disease. **Kawasaki Disease is increasingly common.** The graph below, based on Societi’s study on hospital admissions for Kawasaki Disease shows there are up to 1,000 hospital admissions in the UK every year. Once thought of as a rare disease, this now outdated idea, wrongly held on to by some, leads to delayed diagnosis and with this, increased risk of serious heart damage for children. In the ten years to 2015, hospital admissions for Kawasaki Disease in England increased fourfold – and across the globe cases are doubling every ten years. This is why it is the leading cause of acquired heart disease in UK children. We are working to raise awareness to make sure that doctors EXPECT to see Kawasaki Disease and are READY to treat it. Kawasaki Disease has a range of symptoms including a characteristic and distinctively persistent high fever for five days or more, rash, bloodshot eyes, “strawberry” tongue, cracked, dry lips, redness of the fingers and toes and swollen glands in the neck. Kawasaki Disease can be present with some or all of these symptoms and symptoms often appear in series (i.e. not all at once). Kawasaki Disease should always be considered in any child with unexplained persistent fever. It is a serious illness that can cause damage to the blood vessels in the heart, and leads to acquired heart disease in about one in five affected children. About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 2_ _About Kawasaki Disease_ ## _About Societi Foundation_ ## **What we do** Societi was established in 2015 to raise awareness of Kawasaki Disease. We are an influencing and policy shaping organisation working through partnerships to drive transformational change in awareness across the UK, about Kawasaki Disease. Progress in understanding Kawasaki Disease has been severely hampered by poor levels of awareness, lack of investment and lack of essential research in the UK. _Societi Foundation Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5** ## **Our significant activities:** Our ambition is that EVERYONE knows Kawasaki Disease. In the UK today, affected children face the same poor prospects in terms of outcomes as they did 20 years ago. We want to change that. Societi has four activity areas around which all our actions and operations are focussed. These are as follows: **Awareness raising-** We raise awareness of Kawasaki Disease to improve prompt diagnosis - through a dynamic multi media campaign, reaching GPs, paediatric clinicians, health professionals and parents. The perception of Kawasaki Disease as a rare illness hampers UK research which is stifled by a lack of funds. It also hampers clinical resource allocation and long term clinical support that research shows families need. A lack of awareness of the true incidence of Kawasaki Disease among ‘front line’ clinicians needs to be addressed, in order for Kawasaki Disease to be considered as a possible diagnosis at an early stage, in any child with a persistent fever. **Clinical research -** We work to identify funds and lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease We enable urgently needed research and pursue change to policy and clinical practice for Kawasaki Disease. Not enough is known about Kawasaki Disease, its symptoms or its treatment. Long term care for affected families is limited. Many agencies, doctors and parents are unaware of the disease. We are changing this. **Clinical supervision -** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research This annual report is an important document and has been prepared by Societi Foundation for submission to the Charity Commission. It also serves to help supporters, partners, funders and anyone who reads it to get to know a little more about Societi and Kawasaki Disease - something which is hugely valuable. **Support for UK families -** Keep a sustained focus on support for families affected by Kawasaki Disease by way of development and maintenance of Kawasaki information to help support informed decision making. Provide opportunities for affected families to share experiences and to access advice and emotional support. ## **Our Objectives and Activities:** - The advancement of education for the public benefit into the causes, detection and treatment of Kawasaki disease, by such charitable means as the Trustees shall from time to time determine. ## **Our Values:** **Priority** - We work with others to enable them to recognise Kawasaki Disease as a priority **Pace** - We act quickly with a momentum that comes from our motivation to succeed - The promotion of research into the prevention, diagnosis, causes and treatment of Kawasaki disease by such charitable means as the Trustees shall from time to time determine. **Partnership** - We forge strong and lasting, partnerships with organisations who share our determination to transform the environment around Kawasaki Disease in the UK, and beyond. About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 3_ _About Kawasaki Disease_ ## _About Societi Foundation_ ## **Our Organisational Structure** We work with pace, passion and through partnership to create high visibility for Kawasaki Disease and bring about the transformation our children deserve in their care. We aim to increasingly enable correct care for the thousands of children, young people and adults previously affected by Kawasaki Disease to stem the rising number of children carrying a lifelong legacy of heart damage. **----- Start of picture text -----**
Societi Foundation lifelong legacy of heart damage.
Annual Report & Accounts 1 2 3 4 5
Jan 2022 - Dec 2022
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## _Societi Foundation Organisational Structure_ **----- Start of picture text -----**
Board of Trustees Kawasaki Disease UK
Steering Group
(Societi chair)
Societi Scientific
Advisory Board
Leadership and
Operational Activ it ies
Key Partnerships
Societi Foundation Core
Volunteers & Staff Team
Volunteers &
Fundraisers
Societi Supporters
Key:
Key links
Management
& information
flows
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About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 4_ _About Kawasaki Disease_ ## _About Societi Foundation_ ## **Our Trustee Board** Societi is governed and supported by six Trustee Board Members, Ms Rachael McCormack, Prof Robert Tulloh, Prof Paul Brogan, Mr Roger Greenwood, Mr Gerry Higgins and Mr Peter Ware. Together our trustees bring together a strong combination of skills and expertise to drive and direct the work of our charity. _Societi Foundation Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5** ## **Rachael McCormack FCMI FInstLM** ## **Gerry Higgins** Rachael is the Founder of Societi Foundation and was inspired to create our charity after her family was affected by Kawasaki Disease. She’d found support lacking, and facts few and far between and so undertook to create our charity to support other affected families facing. Rachael has experience across the third, public and private sectors, and leads a consultancy firm she established in 2003. Rachael holds post graduate qualifications in management, is an active researcher and together with our Board, sets the tempo for our growing organisation. Gerry is Managing Director of the Social Enterprise World Forum CIC – a fast growing global organisation which he founded and leads, proactively enabling the development of a global social impact economy. With a BA in Education and a MSc in Business Studies and decades of experience working in, establishing and supporting third sector organisations, Gerry brings in depth expertise in recognising and addressing the challenges of third sector organisational sustainability and leadership to Societi. ## **Peter Ware** Peter is Partner and Head of the Government Sector at Browne Jacobson LLP, specialising in complex procurement, shared services, PFI, outsourcing and public sector joint ventures. His extensive knowledge and his time leading major projects has given him a wealth of experience across sectors. He is also Finance and Membership Secretary of the Procurement Lawyers Association, on the editorial board of CIPFA’s TISOnline, on the editorial Board for Lexis Nexis Local Government and a regular public speaker. ## **Professor Robert Tulloh** Rob, MA DM FRCPCH Honorary Professor of Congenital Cardiology and pulmonary hypertension (retired), is an internationally recognised expert in Kawasaki Disease. Rob led the largest Kawasaki Disease clinic in the UK and the only Adult Kawasaki Disease clinic. He is an active researcher and teacher, and has supported Societi since before its formal establishment. Today, as a Trustee, Rob brings a wealth of expert clinical knowledge and broader oversight for our organisation. Our Board is also supported by: ## **Professor Paul Brogan** ## **Paul Colcomb, Independent Examiner** Paul is Professor of Vasculitis and Honorary Consultant Paediatric Rheumatologist at Great Ormond Street Hospital (GOSH). An expert in Kawasaki Disease, Paul leads a successful clinical and academic programme of work dedicated to the developing field of paediatric vasculitis and auto-inflammatory diseases, including Kawasaki Disease. He is also Chair of the Vasculitis Consortium, and Clinical Lead for Auto-inflammatory Disease at GOSH – and contributes to both the clinical and strategic trajectory of our charity. Paul is a Partner at Wright Vigar, the retained financial specialists and accountants for Societi Foundation – bringing extensive expertise in charitable organisation structures and financial matters. Paul supports both the team and the Board in financial reporting, annual reporting and Charity governance requirements. ## **Report of the Trustees** ## **Roger Greenwood FLI** The trustees present their report with the financial statements of our charity for the year ended 31 December 2022. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019) Roger is a Landscape Architect and master planner by profession, and has been a businessman throughout his career with diverse sector experience. He was the Chief Examiner for his industry professional body for seven years and has been mentor to a vast community of emerging professionals to support them as they developed their practice. He is also, most importantly, a parent of a child affected by Kawasaki Disease. This immensely valuable experience combination of experience and knowledge brings scrutiny, wide ranging skills and support to our charity. **Public benefit** - In setting our objectives and planning our activities our Trustees have given careful consideration to the Charity Commission’s guidance on public benefit. In the pages which follow our delivery and impact during January 2022 - December 2022 is set out. About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 5_ _About Kawasaki Disease_ ## _About Societi Foundation_ ## **Acknowledging our partners** By working in partnership, we can achieve our stated aims and those shared aims of our partners and stakeholders. In partnership we can have greater impact, work with increased pace and reach; and create the urgently needed step change for Kawasaki Disease. About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **2 3 4 5** **1** The issues we face are huge and we know we simply can’t tackle them alone. That’s why we place huge importance on partnership and relationships. If we are to make real progress for our children – if we are to protect tiny hearts from the serious threat of Kawasaki Disease – and if we are to learn and share much more about this serious and enigmatic disease – we need strong partnerships. Our partners, stakeholders and organisations we are in dialogue with are many and varied – and we are so grateful to those who support us by bringing influence, helping us make impact – and those who support us financially. We are extremely grateful to receive support from many organisations including The Randal Charitable Foundation, the Chemical Business Association, Clear Channel, Lanarca, and many more who have expedited the work of Societi in a way that otherwise would not be achievable by our young charity. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 6_ _About Kawasaki Disease_ ## _About Societi Foundation_ ## **Our future plans** Our aim to tackle the leading cause of acquired heart disease in children in the UK remains the same. Our UK National Strategy which was originally created in 2016 and reviewed and updated for 2021 - 2025 defines ambitious targets and the focus areas for our work, going forward. About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5** Shortly after Societi Foundation was established, we led the development of the first ever UK Strategy for Kawasaki Disease in 2016. This important document successfully directed the focus of the first five years of work by our charity. In that time much has been achieved, working through partnerships and creating change across the landscape of Kawasaki Disease. The strategy was refreshed in 2021, and shapes our work up to 2025. Our strategy is a starting point from which to engage with partners to discuss mutual opportunities to address the challenges we collectively face and to drive the work of Societi Foundation. To read our National Strategy for 2021 - 2025 click here. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 7_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38 49 105 111 122 133 144 155** Societi’s campaigns were displayed to MILLIONS of people on Clear Channel’s Adshel and Malls Live digital screen network in shopping centres, on busy streets and in city centres across the whole of the UK. ## **Clear Channel helping to Get Kawasaki Disease known!** Clear Channel continued in its tremendous support for Societi Foundation throughout 2022, enabling us to raise awareness of Kawasaki Disease in a way that otherwise, would just not be possible. The generosity and kindness that Clear Channel has shown Societi is truly overwhelming, and their commitment and support has been just phenomenal and simply transformational. As part of their ‘Platform for Good’ campaign, Clear Channel donated advertising space to Societi over BOTH our main campaign periods, International Kawasaki Disease awareness day in January and World Heart Day in September. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 8_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. 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_Annual Report & Accounts Jan 2022 - Dec 2022_ Kids, and give a fresh feel to our awareness raising, while keeping true to our trusted brand. ## **Our brand new awareness animation is launched!** Launched on International Kawasaki Disease Awareness Day, this fantastic 90 second video, starring our much-loved Societi Kids, provides Societi with an engaging and practical way to share important Kawasaki Disease information. It is a valuable resource that supporters’ donations and fundraising have made possible. The animation will work hard for us being used as an information resource in hospitals and at events as well as on social media. We’ve received some brilliant feedback on the animation since its launch. If you’d like to watch the animation you can do so on Societi’s YouTube channel here. Working with creative experts, The Animation Guys, we set out to create an animation that would give people key information about Kawasaki Disease. We wanted the animation to centre around our well known Societi Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 9_ _About Kawasaki Disease_ _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ the membership donated almost £16,000 including Gift Aid to Societi Foundation. This is testament to the power of our voice and the absolute importance of the messages we can, and do, convey. ## **Chemical Business Association luncheon** Societi were extremely grateful to be invited to attend the Chemical Business Association (CBA) Annual Lunch in April 2022 in London by Chair Kate Mingay. The full Societi team attended the event and we also exhibited a stand full of Kawasaki Disease awareness items for attendees to browse and take home. Funds from the luncheon were invested in close discussion with the CBA and were distributed towards our new family films - see page 37 and our new Parent and Carer Kawasaki Disease Guide - see page 38. As the Chair’s nominated charity, we had the opportunity to get our message out to association members and their guests - all 900 people in the room. Our 10-minute presentation included a speech by Founder, Rachael McCormack, our new awareness animation and our parent voice film. Donations were collected following the presentation, and we broke the fundraising record for the 99 year old association - Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 10_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ The stakeholder forum was a well-attended focused group of partners and employees with the objective to learn more about partner organisations and NHSBT updates. Societi presented for 10 minutes and showed our brand-new awareness animation which was very well received and praised highly. We continue to grow our partnership with NHSBT and work together to raise awareness of Kawasaki Disease and vital blood and plasma donations. ## **Raising awareness with partners - presenting to NHS Blood and Transplant** Societi presented to NHS Blood and Transplant (NHSBT) colleagues to raise awareness of Kawasaki Disease at their stakeholder forum. IVIG - the main treatment for Kawasaki Disease is produced using blood plasma collected by NHSBT and they therefore wanted to understand more about Kawasaki Disease. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 11_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ our messaging continues to engage our followers and gets them thinking about Kawasaki Disease. ## **Campaigning and awareness raising online** Societi’s social media channels are essential to our work in raising awareness of Kawasaki Disease throughout the UK. It is one of the most efficient and effective ways to get our message to as many people as possible including parents, carers and clinicians. As our social media following continues to grow, we are able to achieve greater levels of engagement, consistently furthering our reach. We will continue to invest in our online campaigns and work hard to raise awareness via effective digital marketing initiatives. We continue to work to expand the reach we have through daily posts and campaigns on Facebook, Twitter Instagram and Linkedin. Our content is constantly refreshed, ensuring _Click on the logos below to visit our social media platforms and take a look at our online awareness raising work:_ Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 12_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ #TeamSocieti showed new and ingenious ways of raising awareness and funds for Kawasaki Disease from marathons to pantomimes and everything in between! ## **Supporting our Supporters** The simply astounding support and absolute dedication from #TeamSocieti continued to astonish us throughout 2022. Families - often those who have been affected by Kawasaki Disease themselves - businesses, organisations and others who have been inspired by the work of our charity got involved with some amazing events. We work hard to help our supporters in their awareness and fundraising efforts in every way we can. Our gratitude to every single member of #TeamSocieti for their unrelenting effort and their show of support is endless. Throughout 2022, our FABULOUS supporters took on some fantastic challenges, raising much needed funds and raising awareness of Kawasaki Disease. Below are just some of the things our supporters got up to throughout 2022. _Click on the images below to what just some of our supporters have been up to in their fabulous fundraising and awareness raising activities:_ Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 13_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ know about the work our organisation does. After all, it is their support that drives us and helps us to achieve our objectives for Kawasaki Disease in the UK. ## **The Societi newsletter** Societi produces a regular newsletter with updates about our work that is distributed directly to our supporters. As well as information about our latest projects and activities and invitations to supporters to help us in our work, our newsletters also draw attention to the incredible hard work and achievements of #TeamSocieti. Our newsletters keep our supporters informed about everything we are doing throughout the year and also include everything they have been up to, to raise awareness of Kawasaki and to Support Societi too. Click here to read our 2022 summer newsletter and here to read our 2022 Christmas newsletter. We love to hear all about what our supporters are up to and we hope they like to hear about what we are doing just as much! It is so important that we let our supporters Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 14_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ Societi Active provided the information needed to start fundraising for Societi Foundation and suggested ways to promote challenges and raise awareness of Kawasaki Disease. They also provided training advice and tips from a qualified sports and running coach, offered bespoke training plans for runners, shared ideas, books, music, podcasts and lots of other inspiration. ## **Societi Active** Fabulous volunteers, Hayley, Vikki, Gayle and Lucy continued to lead Societi Active to encourage our supporters to get active for Kawasaki Disease. The team supported our marathon runners, led our ‘Just Move’ event for International Kawasaki Disease Awareness Day and our Virtual 10K for World Heart Day, inspiring everyone with their infectious energy and enthusiasm. We’re really grateful to the team for everything they do and for keeping #TeamSocieti active! Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 15_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ salutations, running 1 mile, 50 press-ups, walking the kids to school instead of driving – the possibilities were endless. ## **Just move** For Kawasaki Disease International Awareness Day 2022, our wonderful volunteer group, Societi Active, kicked off their ‘Just Move’ for Kawasaki Disease awareness challenge. Thank you to organisers, Societi Active and to everyone who got involved, helping to raise awareness of Kawasaki Disease in and around their local communities. Societi Active asked supporters to commit to moving every day for the whole month, starting from Wednesday 26th January. Supporters could pledge to do ANYTHING - 10 sun We are extremely grateful to everyone who took part. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 16_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ supporters for their hugely successful fundraisers and to their friends, family and colleagues too who sponsored them so generously. In total, the Virtual 10K raised an extraordinary £2,220. ## **Societi Active’s Virtual 10K** Going into its 4th year, Societi Active’s Virtual 10K returned for World Heart Day thanks to our fabulous volunteers Hayley, Vikki and Gayle. And once again it was a resounding success – bringing together those most physically active in our community, connecting old friends and forging new links. Incredible achievements in these things alone, but this years 10K went further – with a truly inspiring fundraising effort which went along with it. Huge thanks must go to our We are very grateful to everyone who took part in the Virtual 10K and helped protect tiny hearts. A huge amount of Kawasaki Disease awareness was raised in communities throughout the UK by our participants, all in their Societi running jackets, t-shirts and running vests. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 17_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38 49 105 111 122 133 144 155** - helping our supporters to raise awareness of Kawasaki Disease and protect tiny hearts every sip of the way! Each piece of Societi merchandise is a fantastic opportunity to raise both funds and much needed awareness of Kawasaki Disease. We continue to make our merchandise available to our supporters on our website and promote it through social media. ## **Expanding and promoting our Societi merchandise** We are always thinking of new and innovative ways to enable our supporters to raise awareness of Kawasaki Disease and Societi’s merchandise is a brilliant way to do just that. Some popular additions to our online shop throughout the year were our Societi swim caps and our thermal mugs Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 18_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ ## **Lighting up for Kawasaki Disease awareness** Local press coverage is an incredibly powerful way to raise awareness and we were absolutely delighted to have had stories published that included lots of useful and accurate information about Kawasaki Disease, reaching whole new audiences. Landmarks in towns and cities across the UK - from Weymouth to Inverness - lit up red for International Kawasaki Disease Awareness Day 2022. Thanks to the hard work and dedication of #TeamSocieti, eleven landmarks shone brightly to raise awareness of Kawasaki Disease. We are so grateful to everyone who got personally involved to make this happen - and to everyone who contacted their local landmarks. The support Societi received from these magnificent and iconic regional landmarks that shone a light on Kawasaki Disease and shared our information was just phenomenal! The illuminations were a catalyst for many news stories about Kawasaki Disease appearing online and in local newspapers up and down the country, spreading valuable awareness of Kawasaki Disease to thousands of people in their communities. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 19_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38 49 105 111 122 133 144 155** ## **Raising Kawasaki Disease Awareness through National Political Engagement** The letters sent highlighted the issues surrounding Kawasaki Disease in the UK, urging ministers to prioritise children’s health and asking that this remains high on the political agenda. Highlighting where action needs to be taken by Government, Societi wrote to the UK Prime Minister, the Scottish First Minister and the Welsh First Minister, together with the leader of the UK Labour Party - bringing their attention to for the urgent need to get Kawasaki Disease known. Through our past engagement with Government, Societi has a number of committed MP’s dedicated to getting Kawasaki Disease known. We are grateful for their support which is significant in building a voice and powerful presence for Kawasaki Disease in UK parliament. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 20_ ## _Our activities - awareness raisin g_ _About Kawasaki Disease_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ Together we shared awareness raising messages, hosted a UK-wide outdoor advertising campaign, distributed clinical training and patient information resources across the UK and Europe, highlighted our ongoing KD-CAAP clinical trial work, released an expert-led podcast for our clinical audience, shared our World Heart Day Statement, highlighted Kawasaki Disease to UK Government leaders and held our Virtual 10K community running event. ## **Our World Heart Day campaign** 29 September - World Heart Day - is a hugely important date in our calendar and 2022 was just phenomenal! Working with our partners at the World Heart Federation once again, we had the fantastic opportunity to also work alongside our wonderful supporters and many more exceptional partners, as we raised awareness of Kawasaki Disease and children’s heart health. All these brilliant projects and many more highlighted Kawasaki Disease and the urgent action needed to prevent heart damage in our children. Right from the start of September, our World Heart Day campaign focused on ‘Protecting Tiny Hearts’, getting Kawasaki Disease known by families, carers, clinicians - just about EVERYONE, as we work to protect tiny hearts. To read our World Heart Day impact statement click here. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 21_ _About Kawasaki Disease_ ## _Our activities - awareness raisin g_ ## **Our activities around raising awareness of Kawasaki Disease** We raise awareness of Kawasaki Disease to improve diagnosis and treatment times and reduce the risk of heart damage in our children. Through multi media campaigns, we aim to reach ‘just’ 66 million people - the entire UK population! About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **2** **1** conversations and make sure everyone was able to get to KNOW Kawasaki Disease! ## **Our International Kawasaki Disease Awareness Day campaign** Our KNOW Kawasaki Disease campaign for International Kawasaki Disease Awareness Day 2022 was an overwhelming success. And that’s thanks to our supporters ‘#TeamSocieti’, and the HUGE commitment of time, effort and energy both our supporters and our partners gave throughout January. We are very grateful to everyone who has got behind what we think has been the biggest and best awareness day campaign ever delivered for Kawasaki Disease! All of the activities from the launch of our new awareness animation to our campaign being displayed to millions across the UK, to wear red days - all of which led to such an amazing day are highlighted here in our impact statement! Our work together to raise Kawasaki Disease awareness included many supporters getting involved with magnificent projects designed to highlight issues, start ## _International_ **Kawasaki Disease** _Awareness Da 2022 y_ **----- Start of picture text -----**
Our KNOW Kawasaki Disease campaign for International Kawasaki Disease Awareness Day 2022 was an overwhelming success.
And that's thanks to YOU - #TeamSocieti, and the HUGE commitment of time, effort and energy both our supporters and our
partners give, not just through January but all through the year. Our work together to raise Kawasaki Disease awareness included
so many of you getting involved with magnificent projects designed to highlight issues, start conversations and making sure
KNOW everyone you know was able to get to KNOW Kawasaki Disease! A MASSIVE THANK YOU to everyone who has got behind what
we think has been the biggest and best awareness day campaign ever delivered for Kawasaki Disease! Every single person who
Kawasaki Disease gets to know Kawasaki Disease through our work together is a precious achievement. Why? Because that knowledge could
protect a tiny heart from life long heart disease. It doesn’t get much more precious than that. Just some of #TeamSocieti’s
extraordinary achievements which led to such an amazing day are highlighted here in our impact statement!
Launching our brand new awareness animation! Continued valuable support from Clear Channel! Lighting up across the UK Local press coverage highlights Kawasaki
We were absolutely delighted to be able to launch our brand new Clear Channel has continued in its tremendous support for Societi Landmarks in towns and cities across the UK - from Disease
Kawasaki Disease awareness animation this International Kawasaki Foundation, enabling our small charity to raise awareness of Kawasaki Weymouth to Inverness - lit up red for International Kawasaki News stories about Kawasaki Disease appeared in online
Disease Awareness Day. This fantastic 90 second video, starring our Disease in a way that otherwise, would just not be possible. At an even Disease Awareness Day. Thanks to the hard work and and in local newspapers up and down the country,
much loved Societi Kids, provides Societi with an engaging and practical bigger scale than ever before, Societi’s campaign was displayed on dedication of #TeamSocieti, eleven landmarks shone brightly spreading valuable awareness of Kawasaki Disease to
way to share important Kawasaki Disease information. It is a valuable Clear Channel’s spectacular Adshel and Malls Live digital screen to raise awareness of Kawasaki Disease. A really special thank thousands of people in their communities.
resource for us at Societi Foundation that will work hard for us, spreading network. Our Kawasaki Disease awareness raising message was you to everyone who got personally involved to make this Local press coverage is an incredibly powerful way to
our vital message; that EVERYONE needs to know Kawasaki Disease. displayed across the whole of the UK, in shopping centres, on busy happen - and to everyone who contacted a local landmarks raise awareness and we were absolutely delighted to
Societi were only able to create this fantastic awareness raising resource streets and in city centres. Thank you to all our supporters who sent us too...We were quite simply blown away by the support from have had stories published that included lots of useful
due to the amazing support we receive from #TeamSocieti for our photos and videos of the campaign displays - from Brighton Seafront, these magnificent and iconic regional landmarks and we want and accurate information about Kawasaki Disease,
charity. Your donations and fundraising have made this possible!! Thank to Tottenham Court Road, to Doncaster’s Frenchgate shopping centre, to say THANK YOU, for shining a light on Kawasaki Disease reaching whole new audiences.
you to EVERYONE that shared our awareness animation and for all the incredible feedback we have received. You can see the animation on Societi’s YouTube channel here . Please take a look and share with your to the Inverness Eastgate shopping centre - and EVERYWHERE (!!!) in between - we were extremely excited to see them all!The generosity and kindness that Clear Channel has shown Societi is and for sharing our information too! It’s not too early to get in touch with your local council to ask if they can light up your local town hall, cathedral, or landmark for Kawasaki THANK YOU so much to all of our supporters who approached their local press asking them to publish stories for International Kawasaki Disease Awareness
friends, family and wider community - let’s get everybody to KNOW truly overwhelming and their commitment and support has been just Disease Awareness Day next year - and get THOUSANDS of Day. We just couldn't have done this without you!
Kawasaki Disease. Knowing Kawasaki Disease could save a child’s heart! phenomenal. Thank you Clear Channel, we really are very grateful indeed. people in your area talking about Kawasaki Disease!
Societi Active launch JUST MOVE! Super Social! Wearing red for awareness!
Starting on International Kawasaki Disease Awareness Social media shares, likes and comments have been 269% A HUGE thank you must go to all the
Day, our wonderful volunteer group, Societi Active, kicked off their ‘Just Move' for Kawasaki Disease JUST phenomenal throughout the whole of January! Thank you to EVERYONE that shared our KNOW Kawasaki post engagement 744%Twitter schools and nurseries that held a ‘Wear Red Day’ for International Kawasaki
awareness challenge. Societi Active asked supporters to commit to moving every day for the whole month, Disease posts. We had our busiest Awareness Day ever on social media including resharing resources like 170% page views Impressions Disease Awareness Day - a great way to raise awareness! We are extremely
starting from Wednesday 26th January. Supporters MySocieti and our KD-CAAP podcast! Your likes and grateful to all the parents who worked to
could pledge to do ANYTHING - 10 sun salutations, running 1 mile, 50 press-ups, walking the kids school instead of driving – the possibilities were to shares go a long way. Thank you too, to everyone who ran their own Kawasaki Disease awareness campaign. The creative, hard hitting impact of your campaigns 200% website make this happen and to the schools that took part, raising much needed funds and sharing our awareness materials -
endless. Thank you to organisers, Societi Active and to worked hard to help us get Kawasaki Disease known! traffic including our brand new awareness
everyone who has gotten involved, helping to rai se There was a huge leap in our website traffic with raising animation! THANK YOU for
awareness of Kawasaki Disease in and around yo ur people learning about our KD-CAAP research, getting helping to get Kawasaki Disease known!
local communities. to our Family Portal and much more besides.
Kawasaki Disease is the leading cause of acquired heart disease in children in the UK. It’s time we changed that...
... Together we will!
MOVE!
136% Engagement 84%Reach
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Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 22_ ## _Our activities - clinical research_ _About Kawasaki Disease_ ## **Our activities around clinical research** We work to lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease. Click on the buttons below to find out about our activities around clinical research: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **1** ## **Leading Public and Patient (PPI) Activities for the KD-CAAP Trial** Throughout 2022, Societi continued to lead the PPI elements as part of the Trial Management Group and Trial Steering Group for the delivery of KD-CAAP (Kawasaki Disease Coronary Artery Aneurysm Prevention), the largest Kawasaki Disease clinical trial of its type to ever take place. As part of our role, Societi ensures that the views of families and patients affected by Kawasaki Disease are represented. Our work includes ensuring the profile of the trial was raised and the information families need, as they consider taking part in the trial, is available in user friendly formats. Trial specific web pages created and updated by Societi can be viewed on our website here. Societi was the catalyst for the clinical trial which is investigating the potential for better acute treatments for Kawasaki Disease which may reduce the heart damage children can experience when affected by Kawasaki Disease. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review ## **KD-CAAP** - PPI ## **KD-CAAP** – single greatest opportunity for transformation in patient care, - improving outcomes in **Kawasaki Disease** , in a generation Our role: • Co-ordination – Public / patient involvement programme - proactive; social media • Technical/admin – including family liaison - online/reactive • Senior lead (PPI team) - leadership and overview, finance and programme management • Collateral – design, development • Information distribution, evaluation and feedback • Website • Information management • Group work • Participant and centre updates **----- Start of picture text -----**
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Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 23_ _About Kawasaki Disease_ ## _Our activities - clinical research_ ## **Our activities around clinical research** We work to lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease. Click on the buttons below to find out about our activities around clinical research: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **3 4** ## **Raising awareness of the KD-CAAP trial** A KD-CAAP Twitter account dedicated to promoting awareness of the KD-CAAP trial continued to post during 2022 and followers continue to grow in numbers. Societi cross-posts to the Societi Twitter account which has a regular, active following of over 1,250. Societi raises awareness of the KD-CAAP clinical trial to clinicians and to the public as part of our role. Our new Kawasaki Disease resource folder, developed for our Children’s Hospital Partnership Programme included a section about the trial and was distributed to all partner and KD-CAAP hospitals. Societi also developed a Kawasaki Disease awareness poster specifically highlighting the KDCAAP trial for use in trial centres. Societi’s Facebook page, which has an international following of over 2,000, continues to promote and explain the trial and highlight its focus. Societi also draws attention to the work of the trial using LinkedIn via the Societi Foundation account. **----- Start of picture text -----**
These observations have been important drivers for a trial to improve
Kawasaki Disease outcomes across Europe. The KD-CAAP trial is a multi-
centre randomised, controlled, open-label, blinded endpoint assessed, trial to
explore the effi cacy and safety of adjunctive corticosteroid therapy combined
with IVI G /aspirin, versus IVIG/aspirin alone in unselected Kawasaki Dise ase
cases across Europe.
The KD-CAAP Clinical Trial
Why Corticosteroids?
Corticosteroids are an effecti The f o v llowing resources for the e treatment for virtually all forms of vasculitis,
Kawasaki Disease Coronary but they have not been adopted Disease cases, for which there remains signifi cant equipoise. Increasingly Artery Aneurysm KD-CA Prevention trial, A a s fi rst-line treatment of unselected Kawasaki P Clinical Trial are available:
or KD-CAAP is a phase III multi-centre, randomised, open-label, blinded endpoint assessed, trial of corticosteroids pluimmunoglobulin (IVIG) and aspirin, versus IVIG and asprevention of coronary artery aneurysms (CAA) in Kawasaki Disease. Societi is patient and public involvement (PPI) lead and co-investigator for the KD-CAAP trial which is the single greatest opportunity for compelling evidence summarised above from randomised controlled trials and meta-analyses supports corticospatients with severe Kawasaki Disease, particularly for Japanese patients with a Kobayashi score ≥5, and for whom CAA risk is 20-30% despite IVIG. This does not, however, resolve the ongoing debate about which Kawasaki Disease patients should be considered as “severe” outside of Japan, since the Kobayashi Spotting Zthe challenges of Kawasaki Disease Diagnosis within this p ack. pes t irin for intravenous bras! Overcoming eroid use as primary adjunctive treatment for - available The following patient/parent resources for the KD-CAAP Clinical Trial are available: RCPCH endorsed TEMPERS Kawasaki Disease within this p ack. - available Long term issues leafl et for
transformation in patient care, improving outcomes in Kawasaki score and other clinical severity-scoring systems have poor predictive value mnemonic awareness leafl et - parents and carers - available to
Disease, in a generation. in non-Japanese patients. Given however, the aforementioned high CAA available to download by scanning the download by scanning the QR code
complication rates seen across Europe (16-45%), all Kawasaki Disease patients QR code below. below.
What is the aim of the KD-CAAP trial? are arguably at high-risk of CAA despite IVIG, and could therefore potentially
The aim of the KD-CAAP trial is to determine whether adding immediate benefi t from adjunctive corticosteroids as primary treatment for Kawasaki
corticosteroid treatment to standard of care IVIG and aspirin will reduce Disease. Therefore there remains signifi cant equipoise regarding the use of
coronary artery aneurysm (CAA) rates in unselected Kawasaki Disease patients corticosteroids as primary treatment combined with IVIG for all patients, i.e.
across Europe compared with IVIG and aspirin alone.not just the most severe cases. Time to ‘Think Kawasaki
Disease’ RCPCH-BPSU webinar
Why do we need a clinical trial? A number of recent studies conducted in different European countries Where can I fi nd out more about KD-CAAP? You can fi nd out more about the KD-CAAP clinical trial by visiting the UCL KD- Clinician information poster available within this pack. - - scan the QR code to access.
(UK, Sweden, and Germany), Russia, and tCAAP website h e Unitettp://k d caap.mrcctu.ucl.ac.uk/ or scan the QR code below: States have recently
demonstrated alarmingly high rates of coronary complications despite IVIG. Coronary artery aneurysm (CAA) rates ranged from 16% in the Swedish study (45% in infants under 12 months), to as high as 42% in younger children General awareness poster available within this pack. - the QR code below to acces Family information portal s. - scan
in the German survey. In the UK, a recent survey (2013-2015) suggested
that 19% of children with Kawasaki Disease still developed CAA despite IVIG;
and, even more worryingly in that survey, 39% of patients under the age of
1 year developed CAA despite IVIG [7]. These high complication rates now You can also visit the KD-CAAP web pages at https://www.societi.org.uk/kd-
emphasise the need for an urgent reappraisal of IVIG and aspirin as the primary caap/ or scan the QR code below:
therapeutic agents for Kawasaki Disease. RCGP e-learning module
We have recently published evidence-based, consensus European guidelines - scan the QR code to access.
for the diagnosis and treatment of Kawasaki Disease and in doing so clearly
observed: My Societi Youth Portal
• Higher CAA rates than previously considered to be associated with IVIG-- scan the Q R code below to access.
treated Kawasaki Disease;
• Important evidence gaps regarding lack of an appropriate clinical tool to stratify patients at highest risk of CAA outside of Japan, and hence who to Trial Partners Assent/consent forms at p artici p atin g KD-CAAP centres- available
target for more aggressive treatment; and
• Signif cant equipoise among the paediatric community across Europe regarding societi.org.uk
the use of adjunctive treatm ents for unselected Kawasaki Disease cases.
Trial Partners Trial Partners
societi.org.uk societi.org.uk
Trial Partners
societi.org.uk
Scan me Scan me
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About
Kawasaki
Disease
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## _Our activities - clinical research_ ## **Our activities around clinical research** We work to lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease. Click on the buttons below to find out about our activities around clinical research: ## About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research ## _Societi Foundation Annual Report & Accounts Jan 2022 - Dec 2022_ **----- Start of picture text -----**
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## **Contributing to Kawasaki Disease incidence research** Contributing to its development throughout 2022, Societi were co-authors of the paper which identified all cases in hospital episode statistics using data obtained from the National Congenital Anomaly and Rare Disease Registration Service (NCARDS). The paper calculated incidence rate ratios, assessing the influence of age, sex, ethnicity and index of multiple deprivation. Societi contributed to research led by Dr Fiona Pearce of the University of Nottingham, into incidence of Kawasaki Disease using hospital admissions data for England 20062021. **----- Start of picture text -----**
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## _Our activities - clinical research_ _About Kawasaki Disease_ ## **Our activities around clinical research** We work to lever efforts building on enhanced awareness of need, to undertake and urgently advance critical research to understand, diagnose and manage Kawasaki Disease. Click on the buttons below to find out about our activities around clinical research: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **2 3 4** ## **Continuing our Diagnosis Day research poll** During 2022, Societi undertook to collect information as part of an important update to a research project first conducted in 2018. The Diagnosis Day research poll seeks our supporters experience of Kawasaki Disease to understand more about just what is happening when our children are first being diagnosed. Societi will use the anonymised information gathered through the poll to highlight any ongoing challenges families are facing and if diagnosis is being delayed or confused with other illnesses. Work on the poll and the analysis of the information collected was ongoing throughout 2022. Once published, the paper will enable Societi to highlight diagnosis issues and focus training about Kawasaki Disease to help overcome problems being faced. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 26_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ build on relationships with KD-CAAP centres (those participating in the clinical trial Societi is involved with) across Europe, to enable us to share extended resources and clinical training information online. ## **Children’s Hospital Partnership Programme** 2022 was the first year of our three year Children’s Hospital Partnership Programme generously funded by the Randal Charitable Foundation. Societi attended targeted events including the RCPCH annual conference to enable further knowledge exchange and identification of additional Ambassadors. A Societi web page here provides more detailed updates on progress against each of our programme milestones to date. Extensive work went into the development of Kawasaki Disease educational materials and resources to support our efforts in forming strategic partnerships with major children’s hospitals. Key contacts with UK children’s hospitals were identified and relationships developed. Societi also worked to Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision _Interim progress against year 1 specified milestones_ _Specified milestones Work to date Progress Digital resources_ Societi’s Kawasaki Disease digital clinical information Deliver digital clinical information resources have been reviewed and updated in line and resources to all UK NHS Trusts with our hard copy resources. Contact data for NHS and Health boards and all Trusts and Health boards and all KD-CAAP centres KD-CAAP centres across Europe across Europe has been gathered and work will begin shortly to issue resources accordingly. _Establishing key contacts_ Establish key contacts/PGME Key contacts with major UK children’s hospitals and relationships with 15 major UK KD-CAAP centres have been identified. Work has children’s hospitals, identifying a been undertaken to establish key relationships named Kawasaki Disease through which to disseminate Kawasaki Disease Ambassadors information, resources and training. _RCPCH conference_ Attendance at RCPCH conference A large 4x4m stand at the RCPCH conference in with a goal to identify 10 further Liverpool, 28-30 June 2022 has been acquired and hospitals with which to develop preparations to ensure Societi’s impact at the event relationships and potential Kawasaki Disease Ambassadors. are well underway. _Research informed targeting_ After relationships with key children’s hospitals have **DATA** Identify a further 10 hospitals from FOI and other research data been firmly established, work will be undertaken to identify 10 hospitals from FOI and other research data in Kawasaki Disease ‘hot spot’ areas in Kawasaki Disease ‘hot spot’ areas. Contact with these with which to build key hospitals and contacts acquired from RCPCH identified contacts/PGME relationships. hospitals will commence after the end of June. _Hard copy information_ Production of a new hard copy Kawasaki Disease clinical resource is now complete. This Deliver hard copy clinical information to all identified key comprehensive resource will ensure vital Kawasaki Disease information is available to clinical staff within hospital contacts/PGMEs. targeted hospitals. Issuing of the hard copy resource will commence in June 2022. _Training proposals_ A baseline training proposal is currently being **PROPOSAL** Deliver a training proposal to all prepared and will be developed on a hospital by key hospital contacts assessing hospital basis when relationships with key hospital  needs and identifying additional contacts are firmly established. This will allow needs resources required. of individual hospitals to be properly assessed and additional resources that are required to be identified. _Kawasaki Disease symposium_ Societi has been in discussion with doctors from Deliver a Kawasaki Disease Great Ormond Street Hospital who have agreed to symposium to be recorded and assist in delivering a Kawasaki Disease symposium. shared online to all UK NHS Trusts The symposium which will take place on site at and Health boards and all GOSH, is planned for later in the year and will be KD-CAAP centres across Europe. recorded and shared with UK NHS Trusts and Health boards and KD-CAAP centres. _Assessing impact_ Quantitative baseline data has been gathered which Undertake monitoring and research includes Societi FOI data, BPSU data and collaboration to assess impact, building on FOI and with Nottingham University’s on a study into Kawasaki BPSU data, creating baseline Disease incidence. Societi has also updated our information and deliver a clinically Diagnosis Day study which now includes data from backed report including impact achieved nearly 80 families. We are currently looking to publish the report which provides qualitative baseline information. Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 27_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. 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_Annual Report & Accounts Jan 2022 - Dec 2022_ **1** ## **Developing our doctor training film - Kawasaki Disease – Acute Management – An expert led discussion** film. We are extremely grateful to Dr Herberg and Dr Patel for the time and expertise they so generously shared to ensure the film is as useful to other clinicians as possible. Working with the Animation Guys, during 2022 work was undertaken to develop a new doctor training film - Kawasaki Disease – Acute Management – An expert led discussion. The film will prove a valuable resource for clinicians enabling them to diagnose Kawasaki Disease and treat promptly. Created by doctors for doctors, Dr Jethro Herberg and Dr Harsita Patel from Imperial College London discuss how to spot and treat Kawasaki Disease in this expert led training Filming took place in November 2022 with the training film due for release on International Kawasaki Disease Awareness Day, 26 January 2023. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 28_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **1** ## **Attendance at the RCPCH Conference** awareness posters & clinician posters, NICE guidance, research papers on Kawasaki Disease, our new research postcard and much, much more. Societi had an exceptional three days exhibiting at the Royal College of Paediatrics and Child Health annual conference in June 2022. The interest in our work was incredible and the conversations we had showed huge appetite for Kawasaki Disease learning resources. We made a huge impact and seized the opportunity to speak to hundreds of clinicians from all over the UK, Europe and further afield too. We had great success recruiting new Ambassadors to our Children’s hospital Partnership Programme and drew a lot of attention from all attendees with our Kawasaki Disease notepads, post-its, pens, fridge magnets, love heart sweets and chocolates. Many resources were taken away from conference by clinician’s including our new resource folder funded by Randal Charitable Foundation, Spotting Zebras clinician training booklet, clinical guidelines for long term care, Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 29_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ record a ‘for doctors’ podcast, to make sure Kawasaki Disease stays high on the radar of doctors. ## **Creating our new Kawasaki Disease resource folder** In September as part of our World Heart Day campaign, Societi brought UK leading clinical voices together, to focus on getting Kawasaki Disease known by doctors and healthcare professionals. The experts covered topics around spotting Kawasaki Disease, differentiating between Kawasaki Disease and other illnesses and a national perspective on NHS priorities and programmes, underpinning delivery of better outcomes for our children. Experts Professor Damian Roland, University Hospitals Leicester, Professor Paul Brogan, Great Ormond Street Hospital and Professor Simon Kenny, NHSE Clinical Director worked with us to take part in an interview and The podcast can be listened to here. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 30_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ ## **Working with our Scientific Advisory Board** We work with the Scientific Advisory Board on a regular basis to ensure our output is reviewed by experts, meaning our supporters can rely on the information and facts we share. Kawasaki Disease has many effects on a child and as such a multi-disciplinary approach to research/care is needed for this disease. During 2022, our Scientific Advisory Board input into many aspects of our work including, our Covid-19 vaccines for children statement, expert podcasts, our parent and carer Kawasaki Disease guide, our Kawasaki Disease resource folder and much, much more. Societi is supported by the phenomenal clinical expertise of our Scientific Advisory Board - UK leading medical experts who guide and underpin our work as a charity. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families **Prof Despina Eleftheriou** Paediatric Rheumatologist, Great Ormond Street Hospital and Institute of Child Health **Prof Paul Brogan** Professor of Vasculitis and Honorary Consultant Paediatric Rheumatologist, Great Ormond Street Hospital **Prof Michael Levin** Professor of Paediatrics & International Child Health, Imperial College London Financial Review Structure, Governance & Management Independent examiner’s statement **Dr Tom Johnson** Consultant Cardiologist, Bristol Heart Institute **Prof Damian Roland** Consultant and Honorary Associate Professor in Paediatric Emergency Medicine, University Hospitals, Leicester **Dr Owen Miller** Consultant in Paediatric and Fetal Cardiology, Clinical Director, Congenital Heart Network, Evelina London Children’s Hospital Statement of financial activities Balance sheet Notes to the financial statements **Dr Filip Kucera Dr Jethro Herberg** Paediatric Cardiologist, Great Ormond Clinical Reader in Paediatric Infectious Street Hospital Disease, Imperial College London Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 31_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **2** **1** During 2022, the group focused on standardising lifetime clinical care and adoption of published lifetime guidance, the challenges that remain with lifetime care with many children being prematurely discharged and lost to follow up, and the approach to transitioning patients from paediatric services to adult care. ## **UK Kawasaki Disease Steering Group** Societi continues to chair the UK Kawasaki Disease Steering Group - a UK wide partnership group comprising key Kawasaki Disease experts, national leaders and influencers who act together as a catalyst for positive change around Kawasaki Disease - for awareness, knowledge sharing and to encourage best practice in clinical care. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 32_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1** ## **Creating our new Kawasaki Disease resource folder** and clinician’s Q&A to name a few. As part of our Hospital Partnership Programme, Societi created Kawasaki Disease resource folders for clinicians to use and share with their teams. The resource folders have been distributed across the UK to Children’s Hospital Partnership Programme Ambassadors and have also been converted to digital format. The digital version of this useful resource was distributed to every NHS trust and health board throughout the UK as part of our World Heart Day campaign - with an estimated potential reach of over 3,750 paediatric clinicians. Developed with generous support from the Randal Charitable Foundation, the packs draw together really useful Kawasaki Disease educational resources. These include our Spotting Zebras booklet, NICE guidance, new long-term guidance, Kawasaki Disease myths and facts Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 33_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38 49 105** comprehensive, expert clinician-led “Spotting Zebras!” booklet to ensure that the most accurate and detailed information is available to clinicians likely to see children with Kawasaki Disease. It was extremely well received by supporters on Twitter, our Partnership Hospital Partners and at the RCPCH annual conference. ## **Reviewing and republishing ‘Spotting Zebras’** “Spotting Zebras! Overcoming the challenges of Kawasaki Disease Diagnosis” is an information pack based on a RCPCH training webinar by Professor Robert Tulloh and Professor Paul Brogan. In 2022, with the help of our Scientific Advisory Board members, Societi re-published (including on our website and within our new resource packs) and updated our You can view our “Spotting Zebras!” booklet here. 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_Annual Report & Accounts Jan 2022 - Dec 2022_ **1** of healthcare providers on Twitter, Facebook, Instagram and Linkedin – promoting key awareness messages and other important information. Societi also continues to host and manage a separate KDCAAP Twitter account raising awareness of the research trial with clinicians and cross posting Kawasaki Disease awareness posts with the main Societi account. ## **Social media for clinicians** Societi regularly engages with clinicians through our various social media channels and employs a focused approach to knowledge sharing and awareness raising. Work continued during 2022 with a focused approach and increase in reach across our social media platforms. Our communications are regularly reaching thousands Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 35_ ## _Our activities - clinical su ervision p_ _About Kawasaki Disease_ ## **Our activities around clinical supervision** Gaps exist in current provision for Kawasaki Disease children in their long term care. We work to close these gaps, as well as connect long term care to long term research. Click on the buttons below to find out about our activities around clinical supervision: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38 49 105** following many of the discussions we have had with clinicians during events, conferences and webinars. ## **Updating and reviewing our website clinician’s area** Societi makes information available to clinicians interested in Kawasaki Disease through a dedicated space on our website. The information in our clinicians area is well used and is regularly reviewed and updated with new information being added constantly. The information within this space includes learning information and resources, links to useful Kawasaki Disease research, papers on Kawasaki Disease Management and a clinician Q&A which has been created To view the clinician’s area of our website, click here or on the image opposite. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 36_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **2** **1** ## **Working to create our family story films** The films will provide families affected by Kawasaki Disease with valuable information and reassurance derived from the familiarity of our supporters’ similar experiences. Filming took place in November 2022 with the family films due for release on International Kawasaki Disease Awareness Day, 26 January 2023. Working with the Animations Guys (who also created our animated awareness film earlier in 2022), work began to produce a new suite of family story films. Four fabulous volunteers – Alister, Manda, Olivia and Laura each generously contributed their time and their incredible stories to help other families going through similar situations. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 37_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27** We’re are also very grateful to our Scientific Advisory Board members for contributing to and reviewing all content of this guide, ensuring clinical accuracy. ## **Creating our Kawasaki Disease guide for parents and carers** During 2022 we created our Family and Carer’s Kawasaki Disease Guide in response to the extremely difficult and distressing time that families given a Kawasaki Disease diagnosis can face. Having access to reliable and trusted information, to help better understand a Kawasaki Disease diagnosis, can help to alleviate some anxiety. Many thanks must go to our generous funders for enabling us to create this important resource. The development of the guide was made possible by generous funding received from the Randal Charitable Foundation in relation to our Children’s Hospital Partnership Programme. Funding received from the fabulous members of the Chemical Business Association also enabled the printing and distribution of hundreds of copies of the guide. The guide was shaped by our supporters through our parent survey and our panel of parent reviewers. We are extremely grateful for all the input we received to help make this guide as useful as possible to families facing a Kawasaki Disease diagnosis. To view the resource on our website, please click here. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 38_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27** who had been affected by Kawasaki Disease receiving a Covid-19 vaccine. ## **Updating our statement on children, young people and vaccines for Covid-19** Societi received questions early in 2022 from our supporters regarding Covid-19 vaccines for children. As the Joint Committee on Vaccines and Immunisation (JCVI) assessed the health benefits and risks for our children with careful scrutiny and new guidance emerged, supporters sought advice and reassurance from Societi about children Our existing statement on children, young people and vaccines for Covid-19 was reviewed with close guidance from our Scientific Advisory Board members and the statement was updated and also directed to JCVI and RCPCH statements. The statement is available to view here on our website. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 39_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27** Disease - was re-purposed and re-released as a podcast. ## **Revisiting our Heart-to-Heart virtual round table** In 2020 Societi released our Heart-to-Heart video - a round table discussion with experts from our Scientific Advisory Board, answering questions about Kawasaki Disease put to them by our supporters. Sharing expert, up-to-date and FACT-based knowledge with families and carers of children affected by the alltoo-often devastating consequences of Kawasaki Disease, remains at the top of our agenda. Giving our existing information and resources a new lease of life and making them more accessible, means that even more families affected by Kawasaki Disease will benefit from them. During 2022, this unstoppable conversation, talking through topics like long term issues, aspirin and lifetime care - vital information for families affected by Kawasaki Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 40_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27** We constantly review, update and promote our website and portal content, including our downloadable leaflets and information, to ensure that the most up to date and accurate information is available to users. ## **Updating and promoting our website and online resources** Societi has many assets and resources available for families who have experienced a diagnosis of Kawasaki Disease. Feedback received from supporters suggests that our resources are invaluable tools for those affected by Kawasaki Disease and their families. Our information filled website, Family Resource Portal and children’s and young people’s portal are all extremely helpful resources and can be a lifeline for families experiencing a Kawasaki Disease diagnosis. Visit our website here. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 41_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1** was free and offered on a first come, first served basis. The calendar was a huge success with a huge amount of supporters requesting to be involved in the project. ## **Developing our Societi calendar with our community** Societi worked closely with our supporters to create a calendar which, as well as highlighting key dates in the year (like Awareness Day on 26 Jan!), Also included the birthdays of the people who are part of our Kawasaki Disease community! Families who are affected by Kawasaki Disease can often feel isolated. Our calendar serves as a reminder to these families that their circumstances are similar to many others and they are not alone in their Kawasaki Disease journey. Inclusion of supporter’s birthdays, or their child’s birthday **----- Start of picture text -----**
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Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 42_ _About Kawasaki Disease_ ## _Our activities - su ort for UK families pp_ ## **Our activities around support for UK families** We recognise that when faced with a diagnosis of Kawasaki Disease, support, expert backed information and helpful resources are of vital importance to families. Our work enables a sustained focus on family support. Click on the buttons below to find out about our activities around supporting UK families: About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **2 3 4 5 16 27** **1** ## **Support for the Kawasaki Disease Support Group (KSSG)** Societi hosts the Support Group’s website within its own site and completes updates as and when required. Families who are in need of emotional support are signposted to KSSG. Societi also has an open offer of support financially to KSSG. KSSG are an organisation run by parents of children who have been affected by Kawasaki Disease. They have an invaluable role in providing a listening ear and emotional support for Families affected by Kawasaki Disease. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 43_ ## _Financial review_ _About Kawasaki Disease_ ## **Financial position** At the period end, the charity had total reserves of £100,156 (2021: £123,247) composed of unrestricted funds of £100,156 (2021: £103,247) and restricted funds of £nil (2021: £20,000). About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **2** ## _Reserves Policy_ ## **Context** Societi Foundation (Societi) has established a reserves policy to protect its activities by providing a financial comfort zone against an unpredictable environment and to make sufficient provision for future cash flow requirements to sustain our charitable activities. The policy also provides the framework for future strategic planning and decision-making. The development of an effective reserves policy will reduce the impact of financial risks upon the continuing operations of Societi. The reserves policy and the establishment of ranges is based upon an annual risk assessment of the internal and external operating environment, as well as having a due regard for the nature of activities under taken by Societi for our beneficiaries. ## **Scope** This policy relates to Societi Foundations operation as a charity with four strategic aims - to raise awareness, enhance clinical supervision, enable clinical research and support the UK Support Group. In setting this policy Trustees are aware that, as a newly established organisation our reserves policy will need to be under regular review and be adjusted appropriately to reflect growth in our organisation. ## **Reserves** Societi Foundation holds unrestricted reserves derived from fundraiser income or donations that can be spent at the discretion of the Trustees in furtherance of any of Societi’s objectives. ## **Range of Reserves Held** The target range for reserves has been set by Trustees at no less than £80,000. This policy remains under informal review (annually) and formal review (every 3 years) to ensure that, as a new charity with a rapidly changing financial environment (due to positive growth and an increasing supporter/fundraiser base) our reserves policy remains relevant and continues to act to appropriately safeguard the future operation of Societi. At the year end the charity had unrestricted reserves of £100,156 which included functional fixed assets of £2,803. The ‘free reserves available to the charity was £97,353, which is above the minimum level per the reserves policy of £80,000. ## **Approach to Reserves** The work of our charity is both planned and reactive. As well as planned works, such as the development and delivery of Societi-led projects, opportunities can be presented - or circumstances arise which demand an immediate response or a new approach. New funding opportunities also arise which may require match funding and in order to ensure we are well placed to take advantage of these, and through these address the challenges presented to UK children by Kawasaki Disease, reserves are held by Societi. Societi is a young organisation and we endeavour to maintain a careful rate of growth and development. Trustees recognise that as we grow and incur greater running costs and overheads, our reserves position will need to be reviewed regularly to reflect present circumstances and other extenuating factors to ensure stability and operational continuity for our organisation. Our current reserves level reflects: 1. the modest turnover of the organisation - from which a sum in the region of 6-9 months typical operating cost is identified as reserves. 2. the need to continue our primary operations - awareness raising - in the face of financial pressures. Trustees have satisfied themselves that these can be continued with the modest financial provisions described in this policy. 3. Societi, which is still a young and developing organisation. Our Trustees have a proven track record of delivering the work of the charity within a small budget, having started the charity without grants or access to donations/fundraising. ## **Management of Reserves** Any reserves held in excess of the target percentage will be reviewed by Societi Foundation Trustees on a regular basis and an appropriate range of options will be considered, which might include releasing the funds to enhance delivery of Societi’s objectives. As we grow as a charity this reserves policy could be updated to include provisions such as investment of funds, to generate further income and allow the expansion of Societi’s work. As a young organisation our current focus is on actions to deliver against our objectives and grow our reach. The movement of funds to and from the reserves identified above will be at the discretion of the Trustees. ## **Reviewing our Policy** The Charity Commission recommends that charities develop their reserves policy and their planning at the same time, recognising that strategic and financial planning informs the development of reserves policies and vice versa. Trustees recognise the importance of setting Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 44_ _About Kawasaki Disease_ ## _Financial review_ ## **Financial position** At the period end, the charity had total reserves of £100,156 (2021: £123,247) composed of unrestricted funds of £100,156 (2021: £103,247) and restricted funds of £nil (2021: £20,000). About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ our operational budgets to identify peaks or troughs in cash flow and the reserves policy must ensure the troughs in funding can be met from reserves held. Our reserves policy will be regularly reviewed in light of the changing funding and financial climate and other emerging risks. We publish our assessment of the risks that we are facing as part of our statutory accounts/ annual report. This policy will also be amended in line with UK Government guidance, as amended. Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 45_ _About Kawasaki Disease_ ## _Structure, governance and management_ ## **Governing document** The legal form of the charity is that of a Charitable Incorporated Organisation (CIO) which is controlled by its governing document, its constitution dated 10 July 2017. About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ **2** ## _Recruitment and appointment of new trustees_ ## **Selecting Trustees - Preparations** Prior to mapping out our selection process for Trustees joining Societi Foundation, Trustees are alerted to, and informed of existing and new rules regarding eligibility and automatic disqualification of charity Trustees. Any amendments to these provisions are circulated automatically to Trustees, and the most up to date guidance will be consulted at each point a recruitment process is considered (and always before commencement). Trustees are aware of the need for a balance of skills and abilities on our Board - as well as the need for available capacity in all Trustees if we are to achieve our objectives as a charity. A “hands-on” role is expected from all Trustees as we guide and grow our organisation. In determining the need for additional Trustees therefore we consider current skills, abilities and capacity - as well as horizon scanning for the skill sets and capacity we will need in order to achieve current and future plans. ## **Process to Appoint Trustees** The procedures for electing or appointing new Trustees is set out in overview in our Constitution. Section 10 of the Societi Foundation Constitution notes: (1) Apart from the first charity Trustees, every trustee must be appointed for a term of three years by a resolution passed at a properly convened meeting of the charity Trustees. (2) In selecting individuals for appointment as charity trustees, the charity Trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO. We acknowledge that we are quorate with five Trustees but we recognise that, for a strong organisation, our aim is always to exceed this minimum number of Trustees and that our Trustee cohort should bring breadth of reach, capacity and energy, to ambitiously drive our organisation. organisation as demonstrated by our current Trustees. We will work to recruit Trustees not simply when vacancies occur, but when needs are identified. We will recruit through informal and formal processes - as may be needed and best suited to the Trustee position(s) which we have identified to fill. ## **Appointment** Information on prospective Trustees including professional biographies and/or the findings from formal recruitment processes and/or references taken up will inform the appointment process. Trustees will make a majority decision on the appointment of any new Trustee(s) at a formally convened meeting of the Board of Trustees - whether within or outside of the cycle of planned meetings. This recognises that additional meetings may be called to confirm the appointment of a Trustee if needed. ## _Induction and training of new trustees_ ## **Induction** We recognise that an appropriately organised induction for all new Trustees is vital. It is a gateway for both new trustees - helping them to get up to speed with the role, the organisation and their legal responsibilities. Trustees are alert to the need for a strong induction which ensures we can provide evidence that the people in our organisation have an awareness and understanding of our ambitions and aims - but also, essentially, key policies and procedures such as health and safety and data protection. Our Trustee induction programme includes a variety of activities over a period of time, including: - Meetings and introductions to other Trustees, beneficiaries, service users etc - Invitations to events, meetings and presentations - A Trustee induction pack - Buddying or coaching Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet ## **Recruiting Trustees** As the requirements for Trustees within our growing charity are changing rapidly - mirroring the growth we experience and plan to continue to achieve, it is essential that Trustees joining Societi Foundation can be selected to meet these changing needs. Equally, it is essential that new Trustees are able to join the organisation and bring strong, positive contributions - and in doing this they must match and exceed the level of ambition for our Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 46_ _About Kawasaki Disease_ _Structure, governance and management_ ## **Governing document** The legal form of the charity is that of a Charitable Incorporated Organisation (CIO) which is controlled by its governing document, its constitution dated 10 July 2017. About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ ## _Reference and administrative details_ ## **Registered Charity number** 1173755 ## **Principal address** Victoria Court Holme Lane Winthorpe Newark Nottinghamshire NG24 2NU ## **Trustees** R Tulloh R E A Greenwood R D Greenwood G Higgins Professor P Brogan Professor M W Danson (appointed 6.2.23) P T Ware (appointed 22.6.22) ## **Independent Examiner** Wright Vigar Limited Chartered Accountants & Business Advisers 15 Newland Lincoln Lincolnshire LN1 1XG Approved by order of the board of trustees on 23 October 2023 and signed on its behalf by: .................................................................... R E A Greenwood - Trustee ## _Thank you_ Our annual report is an important document for us as a charity. But it serves to do much more than that by helping anyone who reads it to get to know a little more about Societi and Kawasaki Disease than they did before. For me, that’s a truly valuable outcome to have achieved. Sharing knowledge and growing the number of people who can recognise this often pernicious disease will always remain a core aim for Societi. Thank you for reading our annual report. The time you’ve invested in understanding more about out work means such a lot. With my very best wishes, Rachael McCormack, Founder for Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 47_ _About Kawasaki Disease_ _Independent Examiner’s Report_ **Independent Examiner’s report to the Trustees of Societi Foundation** About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities 23.10.2023 Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 48_ _About Kawasaki Disease_ ## _Independent Examiner’s Report_ **Statement of financial activities for the Year Ended 31 December 2022** About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ |||**Unrestricted**|**Restricted**|**2022 Total**|**2021 Total**| |---|---|---|---|---|---| ||**Notes**|**funds £**|**funds £**|**funds £**|**funds £**| |**INCOME AND ENDOWMENTS FROM**|||||| |Donations and legacies||82,841|-|82,841|182,965| |Other trading activities
Other income|2|14,223
5,095|-
-|14,223
5,095|2,242
10,234| |**Total**||102,159|-|102,159|195,441| |**EXPENDITURE ON**|||||| |Raising funds||31,765|4,250|36,015|33,614| |**Charitable activities**|||||| |Kawasaki Disease awareness||73,485|15,750|89,235|83,365| |**Total**||105,250|20,000|125,250|116,979| |**NET INCOME / (EXPENDITURE)**||(3,091)|(20,000)|(23,091)|78,462| |**RECONCILIATION OF FUNDS**|||||| |**Total funds brought forward**||103,247|20,000|123,247|44,785| |**TOTAL FUNDS CARRIED FORWARD**||100,156|-|100,156|123,247| Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 49_ _About Kawasaki Disease_ _Independent Examiner’s Report_ **Balance sheet 31 December 2022** About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ |||**Unrestricted**|**Restricted**|**2022 Total**|**2021 Total**| |---|---|---|---|---|---| ||**Notes**|**funds £**|**funds £**|**funds £**|**Funds £**| |**FIXED ASSETS**|||||| |Intangible assets|7|2,681|-|2,681|5,980| |Tangible assets|8|122|-|122|360| |||2,803|-|2,803|6,340| |**CURRENT ASSETS**|||||| |Stocks|9|2,346|-|2,346|1,388| |Debtors|10|713|27,881|28,594|136,075| |Cash at bank||99,610|-|99,610|43,049| ||||||| |||102,669|27,881|130,550|180,512| |**CREDITORS**|||||| |Amounts falling due within one year|11|(5,316)|(27,881)|(33,197)|(63,605)| |**NET CURRENT ASSETS**||97,353|-|97,353|116,907| |**TOTAL ASSETS LESS CURRENT**||100,156|-|100,156|123,247| |**LIABILITIES**|||||| |**NET ASSETS**||100,156|-|100,156|123,247| |**FUNDS**|12||||| |Unrestricted funds
Restricted funds||||100,156
-|103,247
20,000| |**TOTAL FUNDS**||||100,156|123,247| The financial statements were approved by the Board of Trustees and authorised for issue on 23 October 2023 and were signed on its behalf by: R E A Greenwood - Trustee Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 50_ _About Kawasaki Disease_ _Independent Examiner’s Report_ **Notes to the Financial Statement for the Year Ended 31 December 2022** About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ ## _1. Accounting Policies_ ## **Tangible fixed assets** ## **Basis of preparing the financial statements** Depreciation is provided at the following annual rates in order to write off each asset over its estimated useful life. The financial statements of the charity, which is a public benefit entity under FRS 102, have been prepared in accordance with the Charities SORP (FRS 102) ‘Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)’, Financial Reporting Standard 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’ and the Charities Act 2011. The financial statements have been prepared under the historical cost convention. Computer equipment - 33% on cost ## **Stocks** Stocks are valued at the lower of cost and net realisable value, after making due allowance for obsolete and slow moving items. ## **Taxation** The charity is exempt from tax on its charitable activities. ## **Fund accounting** The charity is a Charitable Incorporated Organisation (CIO) registered with the Charity Commission in England and Wales. Unrestricted funds can be used in accordance with the charitable objectives at the discretion of the trustees. ## **Financial reporting standard 102 - reduced disclosure exemptions** Restricted funds can only be used for particular restricted purposes within the objects of the charity. Restrictions arise when specified by the donor or when funds are raised for particular restricted purposes. The charity has taken advantage of the following disclosure exemptions in preparing these financial statements, as permitted by FRS 102 ‘The Financial Reporting Standard applicable in the UK and Republic of Ireland’: Further explanation of the nature and purpose of each fund is included in the notes to the financial statements. - the requirements of Section 7 Statement of Cash Flows. ## **Income** All income is recognised in the Statement of Financial Activities once the charity has entitlement to the funds, it is probable that the income will be received and the amount can be measured reliably. Donations in kind are valued at the market rate of the services donated. ## **Expenditure** Liabilities are recognised as expenditure as soon as there is a legal or constructive obligation committing the charity to that expenditure, it is probable that a transfer of economic benefits will be required in settlement and the amount of the obligation can be measured reliably. Expenditure is accounted for on an accruals basis and has been classified under headings that aggregate all cost related to the category. Where costs cannot be directly attributed to particular headings they have been allocated to activities on a basis consistent with the use of resources. ## **Intangible assets** Amortisation is provided at the following annual rates in order to write off each asset over its estimated useful life. Website - 33% on cost Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 51_ _About Kawasaki Disease_ **Notes to the Financial Statement for the Year Ended 31 December 2022** ## _Independent Examiner’s Report_ About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
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_Annual Report & Accounts Jan 2022 - Dec 2022_ |**2. OTHER TRADING ACTIVITIES**||**2022 £**|**2021 £**| |---|---|---|---| |Fundraising events||12,317|-| |Merchandise income||1,906|2,242| |||14,223|2,242| |**3. SUPPORT COSTS**|**Other £**|**Governance costs £**|**Totals £**| |Kawasaki Disease awareness|28,566|1,032|29,598| |Support costs, included in the above, are as follows:||**2022 Kawasaki**
**Disease awareness £**|**Total activities £**| |Postage and stationery
Insurance||2,716
185|526
186| |Accountancy||577|562| |Offce costs||9,886|5,074| |Administrative staff costs||11,665|6,595| |Amortisation of intangible fxed assets||3,299|3,164| |Depreciation of tangible fxed assets||238|235| |Independent Examination||1,032|1,200| |||29,598|17,542| |**4. INDEPENDENT EXAMINATION**||**£**|**£**| |Independent examination fee||900|300| |**5. TRUSTEES’ REMUNERATION AND BENEFITS**|||| |There were no trustees’ remuneration or other benefts for the year ended 31 December 2022 nor for the year|||ended 31| |December 2021.|||| |**Trustees’ expenses**
There were no trustees’ expenses paid for the year ended 31 December 2022 nor||for the year ended 31 December 2021.|| |**6. STAFF COSTS**||**2022 £**|**2021 £**| |Wages and salaries||48,564|54,600| |Social security costs||1,260|16| |Other pension costs||1,150|1,264| |||50,974|55,880| |No employees received employee benefts over £60,000.
The average monthly number of employees during the year was as follows:|||| |||**2022**|**2021**| |Administration||2|2| |No employees received emoluments in excess of £60,000.|||| Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 52_ _About Kawasaki Disease_ _Independent Examiner’s Report_ **Notes to the Financial Statement for the Year Ended 31 December 2022** About Societi Foundation ## _Societi Foundation_ |_Annual Report & Accounts_|**1**|**2**|**3**|**4**|**5**|**1**
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**8**||| |---|---|---|---|---|---|---|---|---|---|---| |_Jan 2022 - Dec 2022_||||||||||| |**7. INTANGIBLE FIXED ASSETS**||||||||||**Website £**| |**COST**||||||||||-| |At 1 January 2022 and 31 December 2022||||||||||11,932| |**AMORTISATION**||||||||||| |At 1 January 2022||||||||||5,952| |Charge for year||||||||||3,299| |At 31 December 2022||||||||||9,251| |**NET BOOK VALUE**||||||||||| |At 31 December 2022||||||||||2,681| |At 31 December 2021||||||||||5,980| |**8. TANGIBLE FIXED ASSETS**||||||||||| |**COST**||||||||||| |At 1 January 2022 and 31 December 2022||||||||||713| |**DEPRECIATION**||||||||||| |At 1 January 2022||||||||||353| |Charge for year||||||||||238| |At 31 December 2022||||||||||591| |**NET BOOK VALUE**||||||||||| |At 31 December 2022||||||||||122| |At 31 December 2021||||||||||360| |**9. STOCKS**|||||||||**2022 £**|**2021 £**| |Stocks|||||||||2,346|1,388| |**10. DEBTORS: AMOUNTS FALLING**
**WITHIN ONE YEAR**|**DUE**||||||||**2022 £**|**2021 £**| |Prepayments and accrued income
**11. CREDITORS: AMOUNTS FALLING DUE**
**WITHIN ONE YEAR**|||||||||28,594
**2022 £**|136,075
**2021 £**| |Taxation and social security|||||||||613|847| |Other creditors|||||||||32,584|62,758| ||||||||||33,197|63,605| |**12. MOVEMENT IN FUNDS**||||||**At**|**1.1.22 £**||**Net movement in**
**funds £**|**At 31.12.22 £**| |**Unrestricted funds**||||||||||-| |General fund|||||||103,247||(3,091)|100,156| |**Restricted funds**||||||||||| |Randal Charitable Foundation|||||||20,000||(20,000)|-| |**TOTAL FUNDS**|||||||123,247||(23,091)|100,156| Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 53_ _About Kawasaki Disease_ **Notes to the Financial Statement for the Year Ended 31 December 2022** ## _Independent Examiner’s Report_ About Societi Foundation ## _Societi Foundation_ _Annual Report & Accounts Jan 2022 - Dec 2022_ **1 2 3 4 5 16 27 38** Our Activities - Awareness Raising ## **12. MOVEMENT IN FUNDS CONTINUED** |Net movement in funds, included in the above
are as follows:||**Incoming**
**resources £**|**Resources expended**
**£**|**Movement in funds**
**£**| |---|---|---|---|---| |**Unrestricted funds**||||| |General fund||102,159|(105,250)|(3,091)| |**Restricted funds**||||| |Randal Charitable Foundation||-|(20,000)|(20,000)| |**TOTAL FUNDS**||102,159|(125,250)|(23,091)| |**Comparatives for movement in funds**|**At 1.1.21**
**£**|**Net**
**movement**
**in funds £**|**Transfer between**
**funds £**|**At 31.12.21 £**| |**Unrestricted funds**||||| |General fund|36,477|(18,726)|85,496|103,247| |**Restricted funds**||||| |Young Person’s Portal|8,308|-|(8,308)|-| |Randal Charitable Foundation|-|20,000|-|20,000| |KD CAAP Trial|-|77,188|(77,188)|-| ||8,308|97,188|(85,496)|20,000| |**TOTAL FUNDS**|44,785|78,462|-|123,247| |Comparative net movement in funds, included
in the above are as follows
**Unrestricted funds**||**Incoming**
**resources £**|**Resources expended**
**£**|**Movement in funds**
**£**| |General fund||88,353|(107,079)|(18,726)| |Restricted funds||||| |Lanarca fund||9,900|(9,900)|-| |Randal Charitable Foundation||20,000|-|20,000| |KD CAAP Trial||77,188|-|77,188| |||107,088|(9,900)|97,188| |**TOTAL FUNDS**||195,441|(116,979)|78,462| **Young Person’s Portal Fund** - The fund arose following a grant from The Foyle Foundation. This grant is to be used to fund the creation of a Children’s and Young People’s Online Information Portal about Kawasaki Disease. **Lanarca Fund** - This fund was a donation from Lanarca towards the staff costs of the charity. **Randal Charitable Foundation Fund** - Randal Charitable Foundation Fund **KD-CAAP Trial** - The fund arose from an agreement for provision of resources with University College London (UCL) as part of a larger grant arrangement. The agreement specifies the expenditure must be spent on delivering the project and any variation needs to be approved by UCL ## **13. RELATED PARTY DISCLOSURES** During the period, the Charity received donated services of £10,517 (2021: £35,256) from Lanarca Limited, a company in which trustees R E A Greenwood and R D Greenwood are directors. Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet Notes to the financial statements Detailed statement of financial activities _Societi Foundation - Annual Report & Accounts January 2022 - December 2022_ _Page 54_ _About Kawasaki Disease_ _Independent Examiner’s Report_ **Detailed Statement of financial activities for the Year Ended 31 Dec 2022** About Societi Foundation ## _Societi Foundation_ **----- Start of picture text -----**
||||||||||| |---|---|---|---|---|---|---|---|---|---| |Annual Report & Accounts|1|2|3|4|5|16|27|38|Our Activities| |Jan 2022 - Dec 2022| |- Awareness| |INCOME AND ENDOWMENTS|2022 £|2021 £|Raising| |Donations and legacies| |Donations|40,004|48,232| |Our Activities| |Gift aid|2,389|2,289| |Grants|29,931|97,188|- Clinical| |Gifts in kind|10,517|35,256|Research| |82,841|182,965| |Other trading activities| |-|Our Activities| |Fundraising events|12,317| |Merchandise income|1,906|2,242|- Clinical| |14,223|2,242|Supervision| |Other income| |Other Income|5,095|10,234| |Our Activities| |Total incoming resources|102,159|195,441| |- Support for| |EXPENDITURE| |UK Families| |Raising donations and legacies| |Wages|24,282|27,300| |Social security|630|-| |Pensions|575|632| |Financial| |Fundraising costs|7,569|84| |33,056|28,016|Review| |Other trading activities| |Opening stock|1,388|3,296| |Purchases|3,917|3,690|Structure,| |Closing stock|(2,346)|(1,388)| |Governance &| |2,959|5,598| |Management| |Charitable activities| |Wages|24,282|27,300| |Social security|630|16| |Independent| |Pensions|575|632| |Subscriptions|278|295|examiner’s| |Advertising|54|168|statement| |Travel and subsistence|2,161|-| |Resource Films|21,140|5,900| |Donated services|10,517|7,512|Statement| |-| |Recharged Staff Costs|24,000|of financial| |59,637|65,823| |activities| |Support costs| |Other| |Postage and stationery|2,716|526| |Insurance|185|186| |Accountancy|577|562|Balance sheet| |Office costs|9,886|5,074| |Administrative staff costs|11,665|6,595| |Computer software|3,299|3,164| |Computer equipment|238|235|Notes to| |Governance costs|28,566|16,342|the financial| |Independent Examination|1,032|1,200|statements| |Total resources expended|125,250|116,979| |Detailed| |NET (EXPENDITURE)/INCOME|(23,091)|78,462|statement| |of financial| |Societi Foundation - Annual Report & Accounts January 2022 - December 2022|Page 55|activities| **----- End of picture text -----**
_About Kawasaki Disease_ About Societi Foundation Our Activities - Awareness Raising Our Activities - Clinical Research Our Activities - Clinical Supervision Our Activities - Support for UK Families Financial Review Structure, Governance & Management Independent examiner’s statement Statement of financial activities Balance sheet **Societi Foundation is a registered charity in England & Wales, number 1173755** _Societi Foundation Victoria Court, Holme Lane Winthorpe, Newark NG24 2NU_ Notes to the financial statements Detailed statement of financial