It can be really hard understanding the complex outcomes of a brain injury. We publish articles about some of the outcomes to help with this understanding at facebook.com/GlobalBrainInj...
Also, we will soon be releasing a new website soon to support this open community page that has a wealth of information about managing rewiring and recovery. If you follow the page you will get the link to the site as soon as it is released.
the problem is, unless you suffer from a tbi / abi you can never begin to understand what its like.
that what makes headway groups so invaluable. sufferers meet other tbi / abi suffers who are able to give advice..........because theyve been there, theyve suffered that problem.
my wife found it a great resource too, learning from others.........yes headway is the only and best resource.
I am a survivor Steve - the site is unique in that it shares experiential information that people can relate to rather than facts.
I love Headway and have even helped them with some of the booklets they publish. They have also published an article I wrote in their magazine. This new site isn't detracting from Headway - we always advise people to get in touch with local support groups - it simply adds a new 'inside' flavour that people all over the world have been enjoying for the last eight years.
We also work with and support Headway groups all over the country - especially where it comes to raising awareness.
Fairly sure it’s not unique in having folks stories, seem to be a number of Facebook groups, blogs etc, all attempting to raise awareness, and with folks stories/experiences.
Sadly since brain injury isn’t sexy/cool it’s unlikely to get much interest, even with the Dragon Lady on side though yet again with another group possibly diluting the Exposure.
I am aware this is somewhat hypocritical since I have my own blog about brain injury, though in fairness it is about mine alone for most part.
I do though feel that if all of the voices where vaguely united might have a better chance of getting awareness.
Hi Roger,
Thank you for your comments.
There are no folk stories on the website - it is based on solid science. Therefore a website rather than a blog page. The site brings profound understanding and in-depth information designed to empower people on their journey through rewiring and recovery.
When you see it I think you will be surprised and will change your mind. That is probably the best time to make judgements and give feedback.
I have been working with organisations and individual advocates across the world for the last eight years bringing the voices together and we have many plans for increasing the number of events that we hold when we release phase two of the website later this year.
You may have heard of the Brain Injury Global Picnic. Many individual Headway groups get involved here in the UK and we have had people join the event right across the world from New Zealand to Vancouver Island. We have had over 70,000 people involved in events (at one time) and regularly reach 20 to 25 thousand people per week via our open community page on Facebook.
So, whilst I would personally hate to think that anyone would find the devastation of brain injury, 'sexy or cool,' there are hundreds of thousands of people across the world who believe that prevention and awareness are critically important.
I'm not sure what you mean by Dragon Lady of the 'diluting' of 'Exposure' so I am afraid I can't comment on this.
We had two websites up to last year when they were hacked and destroyed by an employee who worked for our hosting company - 1 & 1 - and unfortunately he also deleted all the backups so we have had to start from scratch.
These previous websites had links to good blog pages as it is strongly felt in the community that blog pages play their part in helping people feel less alone and isolated. We love supporting everyone who has a positive mindset and wants to help others.
People who join online communities benefit enormously in many ways when they are able to interact with other people and can benefit from the many experiences people share.
We believe that every individual is unique and therefore each person has a way of reaching people that can be very different from the 'norm.' Everyone experiences their journey through brain injury in a totally unique way and together people bring together a wealth of variance and interesting digest.
We have seen huge changes happening both in the media, in medicine and in scientific research, because of the collective work that organisations and people right across the world do.
We have seen changes in the attitudes of families and the general public across the years and without a shadow-of-a-doubt we totally believe that helping other people is a positive and necessary thing.
We also lobby the government here in the UK and work with other organisations as well as Headway. We support research into homelessness and into the number of people who fall foul of the justice system. We educate public servants, businesses and much more.
My original post is merely and invitation to people who are struggling and would like access to more information.
I hope this helps your understanding Roger and thank you again for your valuable input.
It is a facebook group about Brain Injury of which there are plenty, which generally have the same sort of thing as this forum, at least one other person here runs one, maybe more. Facebook groups are great but they aren't unique.
Can't say I had heard of the Picnic, online groups and what not tend to be self serving, in that they don't break out to the wider population folks looking at cat videos are unlikely to stumble on something about brain injury.
To raise awareness does need to be sexy/cool somehow hence though I have some resivations about yet another charity/orgisnation/group in the area, Emilia Clarke, ie Dragon lady from Game of thrones story of her Brain Injury and charity sameyou.org
Did that, it was on the big main stream media, be that website, tv etc it broke out of the brain injury bubble.
Thanks again for the great feedback Roger - opinions are always helpful! 
When phase two of the website (not the facebook portal) is released it will indeed focus on reaching people in 'the wider population.' We totally understand what you are saying here.
'Love Your Brain' is pretty cool and they have done a fabulous job of reaching the general public - indeed they lead the way in so many ways!
I think it is brilliant that people want to reach out and will check out the link you sent. I don't watch TV but have heard of Game of Thrones - thank you!
Hi Annie,
Can I ask if this information is available to people who do not use Facebook? ie on the Headway website?
I don't use Facebook for various reasons (the atmosphere, privacy concerns, difficult to use if I feel unwell etc), and I think charities still need to cater for epople who don't want to or can't use mass social media.
Thanks
Hi Cirrus,
Thank you for asking.
Yes - it will be a website of it's own right - the facebook page only acts as a 'portal' for people who do use social media. I will post the link here for you as soon as we have finished the content editing.
Headway have always very kindly added links to our work before so we will be chatting to them as soon as we have the 'final' 'product' to show them.
Hello my lovely,
It is so encouraging to know that people are prepared to introduce new websites and offer research to help survivors of such a devastating issue. Information is just unavailable at a time when people including desperate family and friends are trying to gather details of helping recovery and general information to help them cope. My family desperately looked for informative research and information to help themselves cope. But above all to tell my two children what to expect and of success stories. My children are 14 and 10 and were present many times when my family were told I would die. Then they were present when my family were told to find a care home, my disabilities would be extensive. I would never walk, talk, know who anybody was or have any memory. We all experienced a miracle when I recovered with absolutely no sign of having the possible life changing accident. I have been very fortunate to be the person I was before my accident. I know a lot of people are not as lucky as I am. They desperately need a place to speak to others that have been in their situation. That can offer advice and much needed support. To know they are not alone. I have found Headway a totally amazing support especially this site. Just to know I’m not alone has helped me mentally and has been an invaluable support system.
Thank you and I wish you every success for the future.
Vikki Hutt
Thank you so much for the positive response and encouragement; it is very much appreciated.
Your story is amazing and over the years I have only met two other people with similar stories.
There are literally millions of people who are dismissed by doctors and don't know where to turn to for help. Even people who are seriously injured can be missed.
Quick, simple information in lay terms can help in so many ways.
Our two previous websites were totally destroyed so we are thrilled to being close to releasing the new site. We had a content editor lined up but she has had to return to her family in Antigua. We have a new ad running so fingers crossed!
Thank you again...
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