Moebius Research Trust Newsletter

Welcome to the MRT Newsletter!

Hi Folks,

Hope this newsletter finds you all in good health. Sorry that we haven’t been in touch for a while but we can assure you that we have been busy behind the scenes.

Thanks to all the publicity and our trip across America, we have rrecently recruited our 100th person. Welcome aboard Andy Ross. We are now in a position to make an application to the Ethics Committee, which will then allow us to access medical records and collect blood – all with your consent of course.

Next step will be a bit of data gathering from HQ (so look out for a separate mailing), which is crucial for us to compile a database for the scientist to work from.

A HUGE thank you to everyone who has raised funds and donated money over the last year. We have had a wide range of events taking place, some of which include: Belfast Bed Push, Bupa Great South Run, Costal Walk, Dublin Womens Marathon, Edinburgh Marathon, London Triathlon, Mobilise for Moebius, Network Scotland Raffle, Psychic Evenings, RBS Dress Down Day, Signed Football, Thrift Shop and our faithful Collection Tins!

Thank you again, we really appreciate all your help and support – we cannot do this without you!

Best wishes,

Dionne & Colin

Fundraising opportunities

If you or your friends ever wanted to do something a bit different here is your opportunity. The Moebius Research Trust are looking for people who would like to do something fun and challenging whilst raising much needed funds for the charity.

Have ever wanted to do a parachute jump here is your chance - There are three types of jump available – an ‘Accelerated FreeFall’ where you can experience the thrill of skydiving solo from up to 12,000 feet, a ‘Tandem Skydive’ from 10,000 feet attached to a professional instructor and a ‘Static Line’ jump which is performed solo from up to 3,000 feet - and you can jump from any one of over twenty British Parachute Association approved airfields across the UK. No experience is necessary as all training is given and if you raise from £360 (depending on the type of jump you choose) you will receive your jump for free.

We are also looking for adventurous volunteers to cycle from London to Paris - connecting two of the worlds most chic cities on one of the best cycling routes in Europe! Cycling through beautiful English villages and into stunning rural France you’ll pass historical landmarks and famous battlefields from World War I until you reach Paris, undoubtedly one of the most magical places on earth.

Or how about an adventurous trek in the Lares region of Peru - this trail that will undoubtedly give you a true insight into Peruvian life and if you raise enough in sponsorship you will get to take part for free! Immerse yourself in ancient Peruvian culture and experience diverse scenery such as tropical Andean rainforests, the snow capped mountain ranges of the Andes and of course Machu Picchu, one of the world’s most important archaeological finds.

So if you would like to make a thrilling parachute jump, cycle from London to Paris or trek in Peru give us a call at the office on 01875 819822 - we will send you a free information pack. If you can't take part in one of these exciting fundraising activities you could really help by putting some posters up around your community i.e library, post office or shops etc. Please contact Dionne on info@moebiusresearchtrust.org and she will send you some posters.

Science goes in search of the inner smile by Dr Jayne Jubb

Last year we sent out a request from Dr Jayne Jubb in the Netherlands for people with Moebius to take part in some research. Here is her update so far and two articles from Emma and Gareth who participated.

Until 18 months ago, I had never heard of Möbius syndrome. That is somewhat difficult to believe now as I sit amongst piles of scientific publications, forms, data and a computer churning away in the corner as it crunches away more numbers. Möbius has become such a part of my daily research life now.

So why are scientists interested in Möbius?

The area of research that I am currently involved in is in investigating ‘Mirror Neurons’. These are neurons scattered in key regions of our brain that react (this is called ‘firing’) not only when we perform a certain action but when we see someone else perform the same action. For example, if you see someone reach to pick up a cup of tea the mirror neurons in your brain fire because you know what it is to pick up a cup of tea. It is as if your brain says ‘Hey, I can do that too!’ and you ‘share’ the action. If someone smiles at you, then the automatic reaction is to smile back….unless you have Möbius and your facial muscles won’t let you.

A smile, for example, is made up of two aspects: a movement aspect, and an emotional component. Seeing someone else crack into a wide-mouthed grin triggers the areas in the brain that know how to do that and areas that know how happiness feels. But what happens in the brain of a Möbius person? If you have never been able to make facial expressions then what is happening in the movement area of the brain? Maybe Möbius people feel more and have their emotional areas more strongly activated than non-Möbius people? These questions have never before been investigated. They are important not only for scientists to understand how emotion and empathy work in the brain, but also for people with Möbius to know more about what is happening inside their own heads.

We set up a two-part study to look at Möbius and recognition of emotions through facial expressions. In Part One volunteers underwent different tests taking about 90 minutes. These included tests for IQ, facial memory, empathy, emotions, facial sensitivity, eye movement and recognition of different expressions at different stages of the expression. Part Two involved coming to Groningen to be put in the brain (MRI) scanner for 75 minutes. During this part of the study the person watched a series of video clips of different expressions, while we measured what was going on in the brain whilst they were doing this. Then they were asked to perform several expressions as best they could, again whilst we recorded what their brain was doing. After this our Mobius volunteers were interviewed to assess if they showed any criteria that could indicate autism, since some reports have suggested that there is a higher occurrence of autism in people with Mobius.

The last volunteers were scanned at the end of January. I am currently in the middle of working through the vast piles of data generated by all the tests that have been done over the past months on all of our volunteers. In total 18 people took part in Part One (9 Möbius, and 9 non-Möbius) and 12 in Part Two (6 Möbius and 6 non-Möbius). It is an exciting time because I have no idea how it will turn out! We have to let the data speak for itself. And of course I shall let you know what the results are, or what we need to next, as soon as I possibly can. So please watch this space….

News from Holland! - Our Forum member's experiences

Emma's experience - I went to over to Groningen in Holland to in January to take part in research on facial expression. Groningen is a beautiful university town with lots of bicycles.
The researcher Jayne Jubb wanted to find out if people with moebius react differently to facial expression. The first part involved a series of tests in looking at faces and trying to recall them. An IQ test followed this. I have never been very good at IQ tests so I knew that this was no exception. I was trying to approach the IQ test logically but even that I found hard. Anyway I didn’t give up and completed it. The 2nd part was going into a MRI scanner for 75 minutes. This was divided into three sections. I had to watch different facial expressions and then try to make them myself. Some of these were very difficult for me to do as I can recognise different emotions but with the lack of movement on one side of my face, it is very difficult to express emotions.

The researchers took scans of my brain and I was able to relax. I didn’t mind being in the scanner but I was glad when it was over as being in it for almost two hours without being able to move was hard towards the end. The next stage involved looking at the images again on screen and deciding how the images made me feel and then how I thought the person in the video felt. This part was quite interesting. The last part involved an autism interview. I was given a book with no pictures and asked to make up a story. Then I had to take 5 objects from a bag and make up a story. It was like going back to my childhood. Our imaginations are good when we are children but we seem to loose our sense of it when we are older. I was then asked a little bit about myself and what did I think was the difference between a friendship and a relationship. Also if I was sad how did it make me feel inside. This I found very tricky questions to answer.

All and all I enjoyed the experience. It was great to be asked to take part in research for moebius. I believe that we recognise the same facial expressions as everybody else. Many thanks to Jayne Jubb and to Dionne who sent me emails about it. It’s a huge step forward for moebius.

Gareth's experience - If you told me less than two years ago that I would have helped in research abroad relating to Moebius I would have found it hard to believe. Up to the point of boarding the plane to Holland I have never really been in the position of putting myself forward for something that was more than talking over a table discussing Moebius. Many reasons for this, but mainly that I was pretty unspectacular! In my case Moebius is mild with no obvious/real complications other than the inability to show expressions and eye movement. There are some amazing people with Moebius, this I have learnt following the discussion forum and I have in the past felt awkward putting myself in the same category as others who have far more complications than I do and get on magnificently. Thinking on though I came to realise that I do have an important story to tell and when the opportunity to go to Holland and potentially offer an insight into Moebius arose, I jumped at the chance.

My destination back in October was Groningen, a lovely City in the North of the Netherlands. I was there to assist Jayne Jubb, originally from Leeds who could flip from her native Yorkshire accent talking to me then flipping to fluent Dutch with a click of a finger! Jayne was, as part of her research study, interested to find out how people who cannot show expression interpret them on others when we talk to people on a daily basis. The first full day I was in Groningen involved meeting Jayne for the first time and her getting me to do an IQ test and facial/eye movements. This took a couple of hours and after I had the day to have a look around Groningen and avoiding the many cycles being ridden by the masses of students.

My second day involved being put into an MRI scanner, which would study my brain as I was shown pictures of people pulling different faces. This will show how my brain interprets this. We have not had the results of the research at the time of writing but I am pleased to say they did find a brain! I was one of a few who have helped Jayne and I only hope our input will answer some questions yet to be answered. There are so many questions relating to social interaction and let us hope this can provide an insight

Over the two days I was in Groningen Jayne was the perfect host showing me the delights of Dutch cuisine and how the natives think it so strange to have milk in tea!

I am so glad I have in a small way done something constructive. I would do it again if it meant a better future for generations to come who have to battle with this misunderstood and little known condition.

April/May 2009

What do we know about Moebius Syndrome?

Moebius Syndrome is a rare congenital disorder which sadly to date has no cure. We believe there are only around 200 cases in the UK, so not many people have heard of this condition.

The main features of Moebius are determined by the absence of the 6th and 7th cranial nerves, which control facial expression. These nerves allow us to blink and move the eyes laterally and give us the ability to smile.

Other nerves and muscles can also be affected by the condition. The vast majority of cases are sporadic, however, there are reported cases of familial inheritance suggesting a possible genetic basis to this syndrome. Without further research the cause, however, will remain unknown.

Read anything interesting?

In this section we will highlight books of interest. If you have any suggestions please click here.

Want to chat?

If you would like to chat with others who have an interest in Moebius Syndrome, the Moebius Research Trust forum is a great place to visit.

Since setting up the Forum on Sept 2007 we now have 1678 articles have been posted to date.

It might also be an idea to mention that it's worth checking out the Events, Links and News pages on the main website as they are constantly being updated.

You can look at the forum by clicking here and to post your comments simply complete the registration form and you will be given access to the site.

Do you or your friends work for a Company that has a charity of the year?

Nominating Moebius Research Trust for your Charity of the Year would be a great way to get the company to work together whilst helping the charity to achieve its aims of funding groundbreaking research.

We would be happy to support youir business in any way that we can tomake the most of the partnership. Click here to contact us.

Want to share your story about Moebius Syndrome? Have you any tips to share or success stories. Please click here and send us your story or comments.

National Voices

We have recently joined National Voices which will aim change health and social care by bridging the divide between people and policy-makers, and now that LTCA members have overwhelmingly voted in favour of transforming into National Voices, they are starting from a particularly strong base. They will:

· - Influence health and social care from conception to implementation

· - Bridge the gap between people’s experience and policy

· - Strengthen the voice of national voluntary organisations, large and small

· - Reflect the diversity of service users and the diversity of their needs

· - Work with regulators, professions, Government and Parliament

· - Campaign on behalf of all patients, carers and service users.

If you wish to receive the fortnightly e-newsletter 10 Things from National Voices, please email.