A friend of mine, one that I don't talk to often but wished that I did a lot more has a great blog on the go about Chiari and his personal fight and feelings.

I am not sure that he is aware, but he has a great writing talent. He wears his heart on his sleeve and can really express how he feels day to day and is not scared of sharing his feelings.

This comes from a cage fighter too! A hard background, but at the same time a massive heart!

please take some time to have a read? his posts are really inspiring and should tug a few strings..... maybe even open up your own feelings?

Useless?

Formication?

Can you work?

It must be your car?

It has been 2 years since Madeleines disappearance already. She may have changed in appearance like all of our kids do from 4 to 6/7 years old.

Please take a look at the video and help pass this video around?

Somebody somewhere must know something?

NHS Choices have launched a blog package within their won website for patients to blog about their own conditions.

They have set out a wide range of terms and conditions that you would appreciate the need for, but it is a massive step towards making much more information available on a personal experience basis.

They really do have to be applauded for their brilliant move in the right direction.

That's right, you and I can now blog about our conditions officially on the NHS Choices website!

Well, not one to be shy - I applied to be an official NHS Choices blogger and I have been accepted.

That's the good news - the bad news is that they do not YET warrant Chiari and Syringomyelia enough of a priority to allow its own blog space.

A good friend of mine who I have met through the forum has decided to have a go at his own blog with reference to Chiari Malformation.

Darren had his op a little before mine in April and has had a fairly rough time of it, and continues to do so.

I am going to help him get his blog up and running by offering him any support that I can, and my first job is to publicise his work through my own.

Please take the time to visit his site Zipperheads UK and perhaps leave him a few messages of encouragement as he starts off.

Laura Hickman managed to get even more publicity for Chiari Malformation Awareness project as the Antony Gormley One and Other project on the 4th Plinth at Trafalgar Square closes amid cries of a great success.

Laura is mentioned in a round up by The Times newspaper as one of the best Plinther's.

The first article

Following on from a valid point raised by Anne Marie a while ago that the NHS choices website does not list Chiari or Syringomyelia in any useful detail, the following has happened.

1. I mentioned it a few months ago to the team at The Walton Centre. They were surprised to hear the news, but were already on with writing a technical piece of patient information to which they have added me to the reading panel. They were also going to push the NHS Choices website to include ACM and SM.

2. Laura Hickman of 4th Plinth Trafalgar Square fame told me yesterday that she has managed to get the NHS choices editorial team to add the subject to their annual review of the website and content.

Please find the following links for other sites containing information about Chiari malformation and Syringomyelia:

Conquer Chiari - An American site, probably the best known in the world at the moment.

American Syringomyelia Alliance Project (ASAP) - another great American site for information.

Patient UK - A great overall view of Chiari and its variables.

World Arnold Chiari Malformation Association (WACMA) - Another great American site.

The Chiari Institute - Yes, another American Chiari related site.

I just thought I would share something with you. I am currently reading a great book written by a fellow Chiari sufferer named "Contents Under Pressure" by an American Guy called Raphael D'Alonzo.

He is the founder of the Cincinnati Support Group and serves on the research council of Conquer Chiari.

His book details his journey with a little background, diagnosis, treatment and beyond. It is precise in detail and gives anyone a great background knowledge into all aspects of his fight.

It is a very positive read to be honest, and although it is American based, where often it seems breeds a little negativity it is a real breath of fresh air.

Hello and thank you for visiting chiariblog.co.uk, a place where you can learn a little about Arnold Chiari Malformation and Syringomyelia through reading about my own personal experiences and those of my close friends and members of this blog site.

I urge you to sign up as a member using the facility on the left and return form time to time to read the updated articles, new posts and hot off the press announcements regarding my journey to increase awareness of Chiari and Syringomyelia within the UK.

You can also find links to a particular forum where you can find people just like you and me from the UK, where we welcome new members, discuss questions and queries, put fears and the more scarier parts to rest, support each other and offer help when and where we can.

Please clock on the link below to take you to the official page.

http://petitions.number10.gov.uk/ChiariAwareness/

Please sign it yourself, get your whole family to sign it, friends, and anyone that you meet that will sign it and help us to make an even bigger impact.

Its free to do and no personal information is collected other than to self verify you for the purposes of the petition.

This is a big part of the awareness campaign so please help us out!

Thank you

Chris

Other related links
Laura' day at the plinth
so what is Chiari Malformation?