The board of Trustees, who are also directors of the Charity for the purposes of the Companies Act 2006, present their report and financial statements of Fungal Infection Trust for the year ended 30 April 2019. The financial statements have been prepared in accordance with the accounting policies as set out on page 11 and comply with the charity’s trust deed, the Companies Act 2006 and the Statement of Recommended Practice – Accounting and Reporting by Charities 2011.
STRUCTURE, GOVERNANCE AND MANAGEMENT
The Fungal Infection Trust (“The Charity” or “The Trust” or “FIT”) is a company limited by guarantee and governed by its Memorandum and Articles of Association.
DIRECTORS AND TRUSTEES
The directors of the charitable company are its Trustees for the purpose of charity law and throughout this report are collectively referred to as the Trustees
The Trustees serving during the year were as follows:
Mr J C Morgan Secretary
Professor P J Folkman
Mr P G Oxnam Chairman
Dr C L Pankhurst
Mr J C Wood-Collins (resigned 23 July 2019)
Professor J Cooke
New trustees are interviewed and appointed by the existing trustees. Before taking up their positions, new trustees are sent on externally run training courses where appropriate.
The trustees have examined the major strategic, business and operational risks which the charity faces and confirm that systems have been established to enable regular reports to be produced so that the necessary steps can be taken to lessen these risks.
The Trustees have undertaken a review of Employment issues and updated their procedures accordingly with particular attention to Health and Safety matters to comply with recent legislative changes.
Organisational Structure and Governance
The Trust is managed by the Trustees. The Trust has no paid or voluntary employees. Accounts are prepared by the Secretary on a regular basis and presented to the Trustees at their meetings. The financial status of the Trust is reviewed by a Trustee sub-committee prior to each Trustees’ meeting and its recommendations presented to the meeting. A minimum of three Trustees meetings are held each year.
Responsibilities of Trustees
Law applicable to charities in England & Wales requires the trustees to prepare financial statements for each financial year which give a true and fair view of the incoming resources and application of the resources of the charity during the year and of its state of affairs at the end of the year. In preparing financial statements giving a true and fair view, the trustees should follow best practice and:
- select suitable accounting policies and then apply them consistently;
- make judgements and estimates that are reasonable and prudent;
- state whether applicable accounting standards and statements of recommended practice have been followed;
- prepare the financial statements on the going concern basis unless it is inappropriate to presume that the charity will continue in operation.
The trustees are responsible for keeping proper accounting records which disclose with reasonable accuracy the financial position of the charity and which enable them to ascertain its financial position and to ensure that the financial statements comply with the Companies Act 2006 and the Statement of Recommended Practice – Accounting and Reporting by Charities 2005 and the Trust Deed. They are also responsible for safeguarding the assets of the charity and hence for taking reasonable steps for the prevention and detection of fraud and other irregularities.
OBJECTIVES AND ACTIVITIES
- To promote research in all aspects of mycology, mycotic diseases, fungal toxicology and microbial disease (of all living things) and to publish the useful results thereof.
- To advance education particularly among physicians and scientists about mycology, mycotic diseases, fungal toxicology and microbial diseases in general.
- To generally support basic research into fungi and fungal disease, train scientists into mycology and related disciplines.
- To provide information to patients suffering from fungal diseases, in particular aspergillosis.
- To raise awareness of fungal pathogens and fungal diseases amongst the general public in the UK and internationally.
Review of Activities
In 2018/19, most of the FIT’s activity was devoted to health professional education, public outreach and research. The FIT website (www.fungalinfectiontrust.org) averaged 3,000 to 5,500 unique visitors per month in 2018-19 (low estimate based on server access), visitors coming overwhelmingly (approx. 90%) from the US.
Online education in fungal microscopy and histology (www.microfungi.net/)
The FIT has extended the world’s first online Microscopy and Histology course (www.microfungi.net), with Module 4 (histopathology of rare fungi) now translated into French, Spanish and Portuguese alongside Modules 1-3. Translations of Module 4 were launched in February 2019. In June 2019, there are 1205 (up from 756 in 2018) registered users in 119 countries on Microfungi.net logging in up to 16 times per day and recording over 50,000 activity records per month. Users can refer to the course materials indefinitely, even if they have completed all the modules and received their certificates.
160 learners are registered to use the translated Modules. Certificates are not awarded for the introductory Module 1 but 143 have been awarded for Module 2, 175 for Module 3 and 26 for Module 4 as of June 2019, a total of 344.
The Aspergillus Website (www.aspergillus.org.uk)
The Aspergillus Website remains the world’s most comprehensive resource for the pathogenic and allergenic fungi Aspergillus and the diseases that they cause. It is completely free to all users. It is supported from the UK National Health Service and unrestricted educational grants from various corporate donors, notably Mayne Pharma, Pfizer, Dynamiker, Gilead and Zambon.
The Aspergillus Website provides simple, free access to >74,000 pages all indexed in Google, ready to be searched, over 13,300 scientific articles (including a unique collection of 831 historical articles) and ~15,900 conference abstracts from 1974 onwards.
The comprehensive list of drugs and drug interactions with antifungals is continually updated, and now includes the drug interaction database (including the antifungal drug interaction app for apple and android phones) is popular and well used. This database is also available as an ‘App’ via iPhone and Android smartphones to allow ease of access and use, both are updated regularly. Nearly 2,300 potentially harmful interactions are listed. Over 3,300 (Android) and 501 (iOS) APPs have been downloaded. Externally there are over 23,000 active links to www.aspergillus.org.uk and www.aspergillosis.org.
The Aspergillus Website is listed at number 1, 1, 2 and 3 in Google.co.uk, number 1, 1, 2 and 3 in Google.com, number 1, 1, 4, 3 in Bing and Yahoo! for ‘aspergillus’, ‘ABPA’ ‘aspergillosis’ and ‘aspergilloma’ respectively. Searching Twitter for ‘aspergillus’ ranks our twitter page at number 1. Searching Facebook for ‘aspergillus’ or ‘aspergillosis’ lists our 40 groups and pages as (by far) the major content on the platform, Our largest group Aspergillosis Support has 1724 members which has grown at the rate of 10 members per week throughout 2019 and activity on that group alone is in excess of 13,000 events in 2019.
If ‘aspergillus’ is searched in Google, there are 11.5 million results.
Current monthly figures show that 100,000 – 130,000 individual computers accessed The Aspergillus Website and Patients’ Website alone per month, 5,000 to 8,000 people daily. This equates to 8.5 million ‘requests for content’. Smaller devices (smartphones and tablets) continue to rise as a proportion of all devices used to access our websites, patients in particular preferring to use them 65% of the time reflecting changes in how we browse the internet. Overall usage of the Aspergillus Website’s seems to have levelled out over the last twelve months, but the Patients Website has been completely refreshed this year and that resulted in a short term drop in viewing figures in early 2019 which may account for some of the lack of increase.
Mapping of www.aspergillus.org.uk (see figure below for 2019 figures, darker shading = more users) shows that The Website reaches people in over 147 countries. USA is the country from which we get most visits with UK and India in the next 2 places, France and China in 4th & 5th place respectively.
Over 54% of users access the Aspergillus Website using iPhone of iPad, 10% use an Android phone and only 36% use a laptop or personal computer. Twitter posts are put out almost every day (@AspergillusWeb – 1,350 followers), Blogs twice a week, and monthly newsletters from the Aspergillus Website are sent out to over 27,000 (free) subscribers. This figure is driven by newly registered members seeking to access our secure ‘articles’.
Patients’ Website (aspergillosis.org)
The Patients Website has had a complete refresh in 2019 which includes moving it to a new domain name aspergillosis.org. We felt that the old domain name (nacpatients.org.uk) was rather exclusive as most users were no longer patients of NAC and aspergillosis.org was also more easily found via Google if a patient was to search for more information. Megan Bridgeland, a University of Manchester student for a year adopted this website as her project and as part of her studies has converted this website to act as the centre of a community rather than a static information resource. This was important as our communities has expanded enormously since the old website was built in 2012.
Since the changeover the domain name does not register in the top page of Google searches so as yet is not being as intensively used as the old website. The old website had declined in use over the last 5 years as most activity switched to Facebook. Despite these limitations use is gradually increasing and in June 2019 attracted 1800 unique visitors who looked at 4300 pages. The top countries utilising the Patients’ Website by origin are: 1. UK, 2. USA, 3. Australia, 4. India, 5. Russia. There are >400 active links to this website.
Many patients and carers use online support discussion groups and the FIT supports these people in several ways:
- Our (Facebook) worldwide communities are very active with >3,000 participants engaging 5000 times per month (https://www.facebook.com/groups/aspergillussupport/),
- The NHS Choices (Now NHS online) online community is no longer hosted on NHS website but has over 2000 members
- Local online Facebook groups (30 groups, 11 in the UK serving 684 people)
- Facebook group specifically for carers (158 members) (https://www.facebook.com/groups/aspergillosis.carers/)
- The Professional LinkedIn members (Aspergillus and Aspergillosis Group) has over 530 members.
The provision of live and recorded online events held by the National Aspergillosis Centre, happening on a monthly basis are now hosted within the Facebook communities and generally get >500 viewers each month.
Leading International Fungal Education (LIFE) (www.LIFE-Worldwide.org)
The FIT continues to support the expansion of the educational brand LIFE, a summary website with key information of fungi causing disease, the most important fungal diseases, causative fungi, diagnostic tests (including skin allergy tests and imaging), and antifungal therapies, in English and Spanish.
It presents information in two main formats:
- Bite-sized summaries, to be used as an introductory overview or quick reference
- Recorded lectures on clinical topics of a quality commensurate with a MSc course, hosted on YouTube
Static content is available in both English and Spanish, and includes focused summaries of the main diseases, treatments, diagnostics and causative agents, as well as continuously-updated listings of treatment guidelines and commercial diagnostics (including direct links to suppliers).
Website traffic for LIFE Worldwide has almost doubled over the past year, from 10,100 in April 2018 to 19,900 in April 2019 (Google Analytics).
LIFE has recently become more active on Twitter, particularly by retweeting key papers as they come out and promoting out new content with multiple-choice quiz questions to test participants’ clinical knowledge. There are currently 600 followers, growing at a rate of around 30 per month.
Since LIFE started posting the clinical lecture series to YouTube, the subscriber list has grown from 29 in June 2018 to 252 in June 2019. Currently around 110 hours of content are watched per month.
Around half of our user base in 2019 is made up of visitors from the US (~24%), India (~15%), Mexico (6%) and the UK (5%). Other countries making up a small minority (1-5%) of our users include the Spain, Argentina, Nigeria, Colombia, and Peru. NOTE outside the UK, US and India a lot of these countries are predominantly Spanish speaking. Around 37% of visits use a desktop computer, ~60% use a mobile phone, and ~3% use a tablet. This reflects a continuing trend across all internet usage that traces a decline in desktop usage and tablets in favour of smartphone browsers.
Quarterly newsletters are sent out to 930 subscribers in English, and the June 2019 issue had an open rate of 75% and a click-through rate of 50%. The total list of subscribers was significantly reduced in order to comply with GDPR laws, but the majority removed were recipients who never opened the email. The newsletters cover research highlights (public health, innovations in diagnostics and antifungal drugs), upcoming courses and conferences, recent updates to the LIFE website and clinical lecture series, book reviews and diagnostic tips.
A twice-weekly blog brings together highlights from the research community compressed into an easy-to-read format that is ideal for busy clinicians, including: clinical patterns, trends in treatment and new diagnostics, public health related to fungal disease, new diseases and organisms, antifungal resistance and clinical practice
A component of the LIFE effort was to boost public awareness of fungal infections generally. This has involved estimating the burden of serious fungal disease in over 84 countries, to highlight the seriousness of a range of primary and secondary fungal diseases. Additions since last year’s report are underlined.
- Published in journals (x59): Algeria, Argentina, Austria, Bangladesh, Belgium, Brazil, Burkina Faso, Cameroon, Canada, Chile, Colombia, Czech Republic, Denmark, Dominican Republic, Ecuador, Egypt, France, Germany, Ghana, Greece, Guatemala, Hungary, India, Iran, Ireland, Israel, Italy, Jamaica, Jordan, Kazakhstan, Kenya, Malawi, Malaysia, Mexico, Mozambique, Nepal, Nigeria, Norway, Pakistan, Peru, Philippines, Portugal, Qatar, Romania, Russia, Senegal, Serbia, Spain, Sri Lanka, Tanzania, Thailand, Trinidad and Tobago, Turkey, Uganda, UK, Ukraine, Uruguay, Uzbekistan and Vietnam. Published burden papers are available at https://www.gaffi.org/media/academic-papers/.
- Presented in abstract/poster form at conferences but not yet published (x22): Australia, Belarus, Benin, China, Congo, Ethiopia, Iraq, Indonesia, Japan, Madagascar, Mongolia, Namibia, Netherlands, New Zealand, Paraguay, Saudi Arabia, Singapore, South Africa, Sweden, Taiwan, Venezuela, Zambia (copies are available on the LIFE website in the news section http://www.life-worldwide.org/media-centre/news)
The FIT also supported a number of interesting and significant findings. There were 24 peer-reviewed publications in calendar year 2018 as a direct consequence of FIT grants, burden of fungal disease estimates (as above) and infrastructure support in prior years and are shown in Appendix 1. The notable outputs include:
- The first review of the occurrence of histoplasmosis in Africa.
- Multiple country burden of disease estimates
- A review of Aspergillus nail infections – probably totalling >10 million worldwide
- Modelling of the frequency of recurrent thrush (yeast infection) in women – numbering >130 million affected globally
- A human mutation (ZNF77) that greatly allows Aspergillus to grow in the human airway
- Confirmation of the link with being a carrier of cystic fibrosis and ABPA
- The fungi found in the airways of people with ABPA and severe asthma and its increase related to corticosteroid therapy
During the year support was given to New Hope Specialist Hospital in Ghana and to the AIDS related Mycoses Conference in Cape Town South Africa. In addition Travel and Living Allowance Grants for attendance and presentation at scientific conferences totalling £4,952 (2018 £6,424) were made during the year as part of the Trust’s policy to support scientists in the early stages of their careers in mycology. Support was also given to an independent body, the Aspergillus Trust, £4,279, in their efforts to promote awareness of Aspergillosis. This included £2,160 towards the cost of a bus poster campaign in London. In return the Aspergillus Trust have raised donations of £5,929 for the FIT.
Who benefited from the Trust’s Activities?
- Researchers all over the world
- Doctors all over the world, especially through the Drug Interactions database
- Patients and their carers.
- Students of medicine, pharmacy, biology and microbiology
- The public – school children, their teachers and parents.
How do the Trust’s Activities Benefit the Public?
The Aspergillus Website has been pivotal in making the topic easier to access for all users, creating strong online communities. There is a continual need to keep pace with the revolution in social media that has strongly influenced the development of communities on the World Wide Web.
In 2015, The Aspergillus Website added provision of live and recorded online events held by the National Aspergillosis Centre in Manchester, happening on a monthly basis. These provide several means of support including factual, social and information on present and possible future means to diagnose and treat aspergillosis. These recordings were viewed 250-450 times per month in 2018. Support for carers is being actively promoted via specialist speakers from the Manchester Carers Group. These meetings have spawned 6 regional group meetings across the UK, led by patients.
The Patient’s Website, affiliated to and managed by The Aspergillus Website team, has made it possible for patients to start writing (and update periodically) their own stories complete with pictures and in some cases have videoed patients telling parts of their stories. Website users now have use of Facebook pages for Aspergillus & Aspergillosis, Mycotoxin Research as well as Patients Support and all updates of the website are broadcast via Twitter (@AspergillusWeb).
For The Aspergillus Website, the addition of Russian papers and a focus on new antifungals coming through will occupy some of the new information to be added. A much more detailed website section on dampness and mould in the home is planned, offering information and support to tenants & landlords. The antifungal drug interaction database will continue to be updated, with the help of a consultant pharmacist, to ensure information quality is as high as possible. Integration of the 50,000-strong Aspergillus Website community with Facebook (local patients & carers support in UK and US), LinkedIn (professional groups), Yahoo Groups (patients & carers), HealthUnlocked (patients and clinical trials), Wikispaces (patients’ own stories), Slideshare (patients support meetings, aspergillus study day for professionals, audio & slides), is ongoing.
The online Microscopy and Histology course will be launched in English, with an infographic and press release, and then translated into Spanish, French and Portuguese.
The results for the period are set out on page 10. There was a surplus of Income over Expenditure for the year of £49,217, (2018 – £ (49,195)). Corporate Governance expenditure represented 5.86% of total income (2018 7.73%).
The trustees do not consider that they have sufficient free reserves to invest surplus funds for any medium to long term. Consequently, funds are maintained in a bank deposit account
The charity have established a policy to maintain unrestricted funds not committed or invested in fixed assets i.e. ‘free reserves’ at a level of between one and two years of unrestricted expenditure. This provides sufficient levels of funds to be able to continue the current activities of the charity and to provide sufficient time to consider and replace existing funding sources should there be a significant change in present funding arrangements.
The reserves policy will be reviewed annually.
The trustees wish to express their appreciation of the work undertaken by Mr J Morgan in running the secretariat and administrative functions of the Trust during the past year.
In accordance with the Trust Deed, a proposal to re-appoint Company Solutions Ltd for the forthcoming year will be put to the general meeting.
On behalf of the Trustees
Peter Folkman Date: 29 October, 2019