The Encephalitis Society
 | This article contains content that is written like an advertisement. (September 2022) |
| Formation | 1994 |
|---|---|
| Type | Non for Profit Organisation |
| Registration no. | charity no: 1087843 |
| Purpose | Charitable |
| Location |
|
Region | Areas Served: International/Global/Worldwide |
Key people | Dr Ava Easton (Chief Executive)
Phillippa Chapman (Deputy Chief Executive) Prof Tom Solomon CBE (President) |
Revenue | £996,911 |
Staff | 14 |
Volunteers | 51 |
| Website | https://www.encephalitis.info/ |
Encephalitis Society is a non-profit organisation providing information and support for those affected by encephalitis, an inflammation of the brain, raising awareness and funding and collaborating on research on the condition.
The Society provides support and opportunities to connect for individuals and families whose lives have been impacted by encephalitis. It funds, collaborates, and promotes research into all aspects of this condition. It also raises awareness of encephalitis among the public and medical and health professionals.
The Chief Executive is Dr Ava Easton who is also a researcher (Honorary Fellow in the Dept. of Clinical Infection, Microbiology and Immunology, University of Liverpool) and global expert on encephalitis patient outcomes and quality of life.
The Encephalitis Society's Work
The Encephalitis Society provides support and information to people affected by encephalitis directly or indirectly, raises awareness of encephalitis, and drives research into the neurological condition by working with a variety of professionals and organisations from health, social care, and education globally.
Support and Information
The Support Service at the Society provides support and information via telephone helpline, email, online chat on their website, and Zoom sessions on request. The Society holds virtual webinars and support groups, as well as face-to-face events, weekends for children and their families, and adult retreats. It also developed a global volunteer scheme called Team Encephalitis. It provides a language line on request for its worldwide audience.
The Society has a comprehensive resource library of evidence-based, peer reviewed, award-winning and accredited information.[citation needed] This includes factsheets, books, booklets, leaflets, newsletters – all available in both hard copy and electronically on website.
They also provide information in digital formats: e-learning, animations and videos (e.g., Youtube[1]). In 2019 the Society reached 20,157 downloads of information from their website and saw enquiries increase by 50%, reaching 49.5 million people across 189 countries through WED.[2]
During the COVID-19 Pandemic, the Encephalitis Society introduced more online support initiatives, including an Encephalitis Support Forum, Virtual Gatherings and The Encephalitis Podcast.
Research
The Encephalitis Society funds and collaborates on research into encephalitis and its consequences. It holds an international annual conference for professionals on the condition, which has become the go-to-conference for encephalitis.
The Encephalitis Society works in conjunction with several universities to develop research, most notably Oxford University, University of Liverpool, and University College London (UCL) and Kings College London.
It collaborates with a worldwide brain infectious group, and other encephalitis organisations worldwide including Brazil, India, Italy, Germany, the Netherlands and the United States of America.
The Society awards annual grant funding through seed funding, PhD and Fellowships. They also give travel bursaries to medical students and junior physicians in low-to-middle income countries to attend the Encephalitis Conference.
They work in partnership with other neurological charities and health organisations at national and international level, to make sure people affected by the condition are diagnosed quickly and have access to services that will contribute to their recovery and rehabilitation.
Their Scientific Advisory Panel consists of experts in encephalitis, including Professor Tom Solomon CBE, Professor Angela Vincent , Professor Barbara Wilson, OBE. The vice chair of the panel is Dr Benedict Michael and chair is Dr Nicholas Davies.
A Global Impact Report developed by Encephalitis Society has identified a range of difficulties and solutions to the global impact of encephalitis which could save lives and improve the treatment and after-care of millions of people today and into the future. A working group was put together between the WHO and the Encephalitis Society resulting in the launch of the report in and an initial meeting (2022) where global partners and stakeholders, including WHO, came together to discuss how to tackle encephalitis urgently in the coming years.
Awareness and Fundraising
Awareness of encephalitis is raised through campaigns such as Encephalitis Research Month, Encephalitis Information Week and World Encephalitis Day. Their fundraising events bring about awareness of the charity, such as Twitter Art Exhibit (TAE) and Radio 4 Appeal.
In 2020, They reached almost 6 million people in 28 countries through Research Month.
It’s mission to raise awareness has the support of several high-profile ambassadors, including Rebecca Adlington OBE, Mathew Bose, Karen Tighe, Suzie Miller, Susannah Cahalan, Simon Hattenstone and Aled Davies.
Facts and Figures
Over half a million people a year worldwide are affected by encephalitis[2]
6,000 children and adults in the UK are affected with the condition each year (Case for Support 2021 Pg.4)
Up to 40% cases of encephalitis depending on the cause result in death[3]
77% of people around the world do not know what encephalitis is[4]
Encephalitis has a higher incidence than Motor Neurone Disease, Bacterial Meningitis, Multiple Sclerosis and Cerebral Palsy in several countries[5]
Activities
Today, The Encephalitis Society provides support and information to people affected by encephalitis, directly or indirectly, and to a variety of professionals and organisations from health, social care and education globally.[6]
The Society holds weekends for families, and adult retreats and has also developed a global volunteer scheme called Team Encephalitis. The Society has a comprehensive resource of evidence-based, peer reviewed, award-winning and accredited information comprising factsheets, books, booklets, leaflets, DVDs and newsletters, available in both hard copy and electronically. Awareness of encephalitis is raised through events such as World Encephalitis Day which was founded by the Society in 2014 and through fundraising events. The Society collaborates and funds research into encephalitis and its consequences and holds an annual conference on the condition as well as annual competitions and travel bursaries for medical students and junior physicians. The charity works in partnership with other neurological charities, health organisations, at national and international level to ensure people affected by the condition are diagnosed quickly and have access to services that will contribute to their recovery and rehabilitation.[citation needed]
In September 2017, it was named the Charity Times Charity of the Year: with an income less than £1 million.[7]
Awards
The Encephalitis Society has won a number of awards, including;
- Silver Chartered Institute of Public Relations (CIPR) Award for World Encephalitis Day 2014
- BMA Patient Information Awards 2016 – Highly Commended
- 2017 Charity Times’ Charity of the Year: with an income less than £1 million
- Charity Times’s Fundraising Technology of the Year (2018)
- Best use of Digital, Digital Impact Awards (2018)
- Charity Comms Inspiring Communicator Award (2019) for Dr Ava Easton
- Social CEO of the Year Award in The Social CEO Awards (2019) for Dr Ava Easton
- Celebrity Charity Champion and Communications Campaign of the Year in the Third Sector Awards (2019)
- Best use of digital by a charity, NGO or NFP (bronze) in the 2021 Digital Impact Awards
- Nominated for Fundraising Team of The Year in the Third Sector Awards (2022)
World Encephalitis Day
The Society launched the first World Encephalitis Day on 22 February 2014. In the years that followed, this annual global awareness day has become the most important date on the calendar for the Society and for people affected by encephalitis around the world.
The fourth annual World Encephalitis Day on 22 February 2017, reached an estimated 40 million people through traditional and social media and saw over 50 global landmarks go #RED4WED by lighting up in the colour red.[8] These included Niagara Falls, the fountains at Trafalgar Square, the Swan Bell Tower, Perth, Blackpool Tower and Bolivia Triplet Bridges.
References
- ^ "The Encephalitis Society - YouTube". www.youtube.com. Retrieved 27 July 2022.
- ^ a b "Our Accounts".
- ^ Jmor, Fidan (2008). "The incidence of acute encephalitis syndrome in Western industrialised and tropical countries". Virology Journal. 5, Article number: 134 (2008): 134. doi:10.1186/1743-422X-5-134. PMC 2583971. PMID 18973679.
{{cite journal}}: CS1 maint: unflagged free DOI (link) - ^ "Our Accounts".
- ^ "Our Accounts".
- ^ Name. "The Encephalitis Society | ACNR | Online Neurology Journal". www.acnr.co.uk. Retrieved 18 April 2017.
- ^ "Charity Times Awards". www.charitytimes.com. Retrieved 19 October 2017.
- ^ "Charity to turn the world red". Gazette & Herald. Retrieved 18 April 2017.