2021-12-31-accounts - Societi Foundation

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Societi Foundation Annual Report & Accounts 1 January 2021 - 31 December 2021 Registered charity number 1173755

societi.org.uk

Societi Foundation Annual Report and Accounts January 2021 - December 2021

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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About Kawasaki Disease

Kawasaki Disease symptoms

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Rash
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Cracked lips/ Bloodshot Swollen Swollen ‘strawberry’ eyes glands fingers/toes tongue

Persistent fever

Kawasaki Disease is the leading cause of acquired heart disease in children in the UK.

It is a type of vasculitis that mainly affects young children but it can affect people of any age – and 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 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 is increasingly common. The above graph, 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 Once thought of as a rare disease, this now outdated idea, wrongly held on to by some, leads to delayed diagnosis and with this, increased risk of serious heart damage for children.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 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.

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 increases with increasing delay.

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societi.org.uk
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Societi Foundation Annual Report and Accounts January 2021 - December 2021

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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About Societi Foundation

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.

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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.

backdrop of Covid 19 which has restricted us, like so many organisations. Limits on staff coming together have had an impact on our team, virtual and online Trustee meetings have shifted the dynamic too -and most significantly, the constraints faced by families during lockdowns and the far reaching impact of Covid 19 has limited fundraiser activities, awareness work and more.

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.

Report of the trustees - The trustees present their report with the financial statements of our charity for the year ended 31 December 2021. 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).

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..

We have faced these challenges with resolve and with bold choices by our trustees, to continue our urgent work with unrelenting determination. Trustees recognise too that the impact of Covid 19 will be lasting, and our continued growth as an organisation and future success will depend on continued strong leadership from our trustees, support from influential partners and the growth of our amazing community of supporters who volunteer and carry out so much of our work.

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 2021 - December 2021 is set out.

We enable urgently needed research and pursue changing 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.

Societi Foundation and Covid 19 - In setting out this report, whilst much has been achieved during the year to December 2021, it must be recognised that this has been once again with the very challenging

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

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societi.org.uk
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Societi Foundation Annual Report and Accounts January 2021 - December 2021

About Societi Foundation

Societi was established in 2015 as an organisation to raise awareness of Kawasaki Disease – a disease which affects hundreds of children in the UK each year. Societi is an influencing and policy shaping organisation which works through partnerships to drive transformational change in awareness across the UK, about Kawasaki Disease.

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Our Objectives and Activities

Annual Independent Report Examiner’s Report

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.
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.

Significant activities - Societi has four activity areas around which all our actions and operations are focussed. These are as follows:

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About Societi Foundation
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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.

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

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Our Activities -
Clinical Research
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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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Our Activities - Support
for UK Families
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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.

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Structure, Governance
& Management
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Our Values

Priority - We will work with others to enable them to recognise Kawasaki Disease as a priority

Pace - We will act quickly with a momentum that comes from our motivation to succeed

Partnership - We will forge strong and lasting, partnerships with organisations who share our determination to transform the environment around Kawasaki Disease in the UK, and beyond.

societi.org.uk

About Societi Foundation

Our five Trustee Board Members, Ms Rachael McCormack, Prof Robert Tulloh, Prof Paul Brogan, Mr Roger Greenwood, and Mr Gerry Higgins bring together a strong combination of skills and expertise to drive and direct the work of our charity.

Societi Foundation

Annual Report and Accounts January 2021 - December 2021

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Our Trustee Board

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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Rachael McCormack FCMI FInstLM

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 families facing, and living with this illness. Rachael has experience across the third sector, 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.

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 and broader oversight for our organisation.

Professor Paul Brogan

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 autoinflammatory diseases, including Kawasaki Disease. He is also Chair of the Vasculitis Consortium, and Clinical Lead for Autoinflammatory Disease at GOSH – and contributes to both the clinical and strategic trajectory of our charity.

Roger Greenwood FLI

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.

Gerry Higgins

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.

Our Board is also supported by:

Paul Colcomb, Independent Examiner

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.

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societi.org.uk
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Societi Foundation

Annual Report and Accounts January 2021 - December 2021

About Societi Foundation

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 - and through expanded knowledge, stem the rising number of children carrying a lifelong legacy of heart damage. They cannot act for themselves. So Societi must.

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Our Organisational Structure

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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Board of Trustees Kawasaki Disease UK
Steering Group
(Societi chair)
Societi Scientific
Advisory Board
Leadership and
Operational Activities Key Partnerships
Societi Foundation Core
Volunteers & Staff Team
Key:
Volunteers &
Fundraisers Key links
Societi Supporters
Management
& information
flows
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societi.org.uk
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Societi Foundation Annual Report and Accounts January 2021 - December 2021

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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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.

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We place huge importance on partnership and relationships – the issues we face are huge and we know we simply can’t tackle them alone. 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 very thankful to receive support from a number of organisations including Clear Channel, The Randal Charitable Foundation Lanarca, Microsoft, Adobe and Google whose donated services and/ or financial support during the period have expedited the work of Societi in a way that otherwise would not be achievable by our young charity.

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societi.org.uk
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Societi Foundation

Annual Report and Accounts January 2021 - December 2021

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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About Societi Foundation

Our future plans

In 2021, Societi Foundation reported on achievements from its first UK National Strategy for Kawasaki Disease, and comprehensively revised the strategy with ambitious targets for the five years ahead. Our aim remains the same - to tackle the leading cause of acquired heart disease in children in the UK and it defines the focus areas for our work, going forward.

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In 2016, Societi Foundation led the development of the first ever UK Strategy for Kawasaki Disease. 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.

In 2021, to take our work and our organisation forward, building on the successes to date, Societi has both celebrated our achievements since publishing that strategy, and developed a fully refreshed strategy. This takes into account a review of Societi’s core purpose, the current Kawasaki Disease environment, new evidence available from research and resources and capabilities available to our organisation.

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.

Societi’s aims have been reviewed against all the evidence currently available and remain aligned to the aims of the 2016 strategy with an exception of an update to Family Support to enable a sustained focus in this area.

To read our National Strategy for 2021 - 2025 click here.

societi.org.uk

Societi Foundation

Annual Report and Accounts January 2021 - December 2021

Annual Independent Report Examiner’s Report

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About Societi Foundation
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Our Activities -
Clinical Research
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Our Activities - Support
for UK Families
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Structure, Governance
& Management
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Awareness Raising

Activities around raising awareness of Kawasaki Disease

We raise awareness of Kawasaki Disease to improve prompt diagnosis - through multi media campaigns, reaching GPs, paediatric clinicians, health professionals and parents. Click on the buttons below to find out about our activities around raising awareness of Kawasaki Disease:

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Clear Channel helping to Get Kawasaki Disease known!

Once again, the exceptional team at Clear Channel generously donated advertising space for a whole week, in January 2021, including on Awareness Day (26 January), to help us get Kawasaki Disease known, reaching tens of thousands of people!

All week, Societi’s campaign was displayed on Clear Channel’s spectacular Adshel Live and Storm Board digital screen network - in shopping centres, on busy streets and city centres, even on huge screens at the side of motorways - right across the UK!

The campaign raised awareness of Kawasaki Disease across the UK to levels which otherwise Societi would not be able to obtain.

We are so grateful to the incredible team at Clear Channel for this huge act of kindness, their continuing support, help and advice and for their phenomenal commitment to growing their #PlatformForGood Clear Channel Outdoor.