This campaign has now closed
The aim of the project is to produce a book and e-learning package aimed at lay people detailing the science behind the disease. The package will supplement our current information material which focuses on helping people through the recovery phases of the illness.
Categories
Beneficiaries
Situation
Encephalitis is inflammation of the brain caused by infection (usually viral) or by autoimmune disease. Encephalitis is indiscriminate, striking adults and children alike, showing no respect for age, gender, ethnicity or culture. Mortality rates are high and many of those who survive are left with an acquired brain injury, the degree and severity of which will vary. We are aware from feedback from our Support meetings that gaining an understanding of the disease, and how it causes the subsequent difficulties, is valuable in enabling people affected to move forward in their lives. People affected and their families struggle to reconcile how an illness can result in an acquired brain injury – there is no event as such, for example no car crash resulting in head injuries. In addition family members and carers also benefit from understanding why their loved one is, in many ways, a changed person. The aim of the project is to produce a book and e-learning package aimed at lay people detailing the science behind the disease. There is no other organisation in the world producing information of this type for lay people. Engaging people with the science of the disease, that has affected them or their family member, removes the misunderstandings and fears that this disease of the brain can create. The book and e-learning package will be developed in partnership with scientists / clinicians who are experts in their fields. In the first year the Society will work with 3 scientists on 3 topics • Viruses – what they are and how they infect. • The brain – how it works • Inflammation – why this process damages the brain In the second year the Society will work with 2 clinicians on the 2 types of encephalitis • Infectious encephalitis • Post-infectious / Autoimmune encephalitis The topics will initially be presented, with handouts, at Encephalitis Society meetings. Feedback from people attending the meetings will be evaluated and changes made to the materials as a result. The final presentations will be recorded for an e-learning package to be added to the Encephalitis Society web site. The chapters of the book will be developed from the handouts. An illustrator will be commissioned to provide graphic representations of this complex subject. The book will be published in August 2011 and launched in October 2011 with media coverage. Details of the book and e-learning package will be disseminated through the media, internet and at subsequent meetings. The book and e-learning package will be made available from the Encephalitis Society web site. The site is accessed world-wide and has over 1,000 visitors a month. This project will benefit all those visitors who have been affected by encephalitis for many years to come.