Useful Organisations

Living with a brain injury can be difficult at the best of times. Having encephalitis and feeling like you are the only one in the whole wide world going through something so horrible can be soul destroying.

However, you are not alone. There are so many amazingly useful organisations out there to help you at this difficult time.

Here is a summary of my favourites, without them I would not be here today.

The Encephalitis Society (Charity no. 1087843.)

encephalitits-society-logoRun from the top-down with Ava (the CEO) bringing her charismatic charm to every venture, this charity is nothing short of miraculous. Based in a small office in Malton, The Encephalitis Society has become a worldwide charity, helping anyone that has been affected with encephalitis. From Jon on the phones to Philly sorting out the running of everything, this small team has gelled together to provide an imperative safety net for anyone of whom encephalitis has knocked at their door.

Personally I do not know what I would have done without their support, being able to call for advice on anything related to encephalitis whilst also being able to feel like part of their encephalitis family. They arrange away weekends for all different age groups which allow you to meet other sufferers, whilst also spending money on research and raising awareness about encephalitis.

What they say: “We are the only resource of our kind in the world providing a dedicated service to people affected by Encephalitis and their loved ones all over the world.”

I was also fortunate enough to spend a week up in Malton with the team, you can read about it here.

The Eden Dora Trust (Charity no. 1152507.)

eden-dora-trust-logoPetrina (The CEO and Eden’s Mummy) is an amazingly passionate and determined individual, this determination has been passed onto her incredible charity, The Eden Dora Trust. This trust was set up by Petrina after her daughter Eden suffered from encephalitis in 2011. The website is full of information about encephalitis and since starting up the trust has raised so much needed awareness about encephalitis.

Personally, I believe that when someone with as much passion as Petrina puts their heart and soul into something it is destined for greatness. I can already see just how much awareness the trust has been able to raise about encephalitis since opening in February 2014 and cannot wait to see it go from strength to strength.

What they say:”Launched on the first World Encephalitis Day, 22nd February 2014, we formed this trust primarily to raise desperately needed funds to provide training for adults working with children affected by Encephalitis and Acquired Brain Injury (ABI).”

I have also challenged myself to raise £2014 in 2014 for this amazing charity, which you can read more about here.

Headway (Charity no. 1025852)

Based all oheadway-logover the country with different local headways in different areas, this charity helps people with any kind of brain injury – including those with encephalitis. Organised drop in sessions allow people to come along and meet other people that are having similar problems, it is also a great way for those of you that find social interaction difficult to gain in confidence and develop other life skills.

Personally, I have found that Headway have been great at helping me through social media (especially twitter) to allow me to find out what is happening in my local area. My ex-boyfriend also works for Headway’s head office and from speaking to him I have been able to determine that they are great in helping with practical problems such as financial issues and benefits.

What they have to say: “Our mission is to promote understanding of all aspects of brain injury and to provide information, support and services to people with a brain injury, their families and carers.”

headway-devon-logoHeadway Devon

This is the closest Headway to me, but you should be able to find yours by typing where you live and Headway into google!

And some for the kids…

The Children’sTrust (Charity no. 288018)


The brain injury hub is filled with information, news and blogs, whilst the main website gives a detailed overview of the charity and how they help children with brain injury, including encephalitis.

Personally, even as an adult, I have found the information relevant and useful. Personally, I was also lucky enough to do a guest blog on their site recently which you can read here.

What they have to say: “We have an unparalleled reputation in our field thanks to our commitment to meeting the diverse needs of these children and their families, coupled with our ability to deliver the best possible combination of nursing, therapy, medical care and education.”

Snowdrop (Charity no. 1148271)


A charity based in Devon for children with brain injuries, this charity is run by Andrew and his wife, who’s son sadly passed away after suffering from a brain injury.

Personally I have had the pleasure of meeting Andrew and his story really touched me. It was also apparent from meeting him how passionate his was about getting children a better through specialised programmes, as well as raising awareness and learning more through research.

What they have to say: “We provide programmes of neurodevelopmental stimulation for children who have a wide variety of diagnoses, such as cerebral palsy, autism, ADHD, learning difficulties, developmental delay, PDD and many more.  We also provide treatment for children who have a variety of genetic disorders.”

Child Brain Injury Trust (CBIT) (Charity no.1113326 )


What they have to say: “Today the Child Brain Injury Trust is the leading voluntary sector organisation  providing non-medical services to families affected by childhood acquired brain injury across the UK. We operate in England, Scotland and Northern Ireland and have a dedicated team of professional staff and volunteers who give their expertise, commitment and enthusiasm every day. Families continue to be involved in the development of the charity and we continue to be amazed and enlightened by their energy and uniqueness.”

The United Kingdon Acquired Brain Injury Forum UKABIF (Charity no. 1128284)


A charity with resources, events and helping to raise awareness about encephalitis and other acquired brain injuries.

Personally, I am a member of this charity, anyone that has been affected by an ABI can join for free and I would very much recommend doing so.

What they have to say: “The United Kingdom Acquired Brain Injury Forum (UKABIF) aims to promote better understanding of all aspects of ABI; to educate, inform and provide networking opportunities for professionals, service providers, planners and policy makers and to campaign for better services in the UK.”

If you can think of any more useful organisations please feel free to let me know by contacting me.

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