The South?s regional MNDA conference was held at Crawley on 9th April. One feature of the new regional conferences is that there is live streaming of the conference. This enables people to watch the conference live from their own homes.
The day was split into three sections. Firstly there was a section on care – Hilary Fairfield, the Regional Delivery manager spoke. ?There was a section on campaigning and raising awareness. David Setters of East Surrey Branch spoke about his motivations to campaign, alongside John Kell, Policy Manager. Do please watch this as David is an inspiration to many of us and a great speaker.
If you have not?been to an MND conference, do try. The best part as ever, is meeting up with people living with MND and their families. We often call it the “MND family? and it really does feel like you are meeting up with members of a large supportive family. Other highlights are meeting staff from the Association, who normally you only email and looking at all of the stands with all of the MNDA?s literature.
The link to the?livestream is below.
20 Years of MND Care and Research – Do things really change??
The Annual MND Conference was held at King?s College Hospital on Friday 12 June 2015. As it is now 20 years since MNDA has been funding King?s College Hospital MND Clinic, many presentations compared how things were in 1995 to now. One or two points from an information packed day (more should become available as post- conference summaries are released):
- Research undertaken in different countries now to use the same methodology as previously some research was incompatible with that carried out elsewhere.
- A National MND Register ? mapping people living with MND, resources, etc. E. Kent is hoping to be part of this research.
- Bio-marker study underway to find physiological reasons prior to symptoms/diagnosis and also to help with interpreting results from clinical trials.
- One approach to screening for respiratory muscle weakness ? sniff nasal inspiratory pressure. This is now considered an improvement on Maximal Static Pressures which, though also portable, can prove difficult to make a good seal around the mouth piece as the disease progresses.
- Ethical issues around Tracheostomy Assisted Ventilation were discussed. Recent thought is that NIV + Cough Assisted could produce the same length of life as TV.
- Voice and message banking – important to do this whilst speech is still clear. The process records a large inventory of speech or favourite messages that are then used to create a synthetic voice that approximates the normal voice. This voice can then be used on a communication aid later on. However, this is a lengthy and tiring process. Software is free ? currently available is https://www.modeltalker.org (post-conference information suggests that later technology has been developed where a voice similar to the pwMND?s voice can be merged with a few spoken words of the pwMND to form an inventory of speech/messages.)
- Current research is looking at a 6-step process, e.g. 6 hits before MND manifests itself. Thus, genetics forms step 1 and the following 5 steps/hits from environment, lifestyle, etc., lead ultimately to MND. A reason why a large proportion of pwMND are in the older age range. More now needs to be known about the ?steps? and how these can be identified and prevented.
- Sheffield Support Collar ? this newly designed collar, especially for pwMND and which was announced at last year?s conference, is now at the trial stage and there is a request for 100 people with MND and experiencing some degree of neck weakness/pain to volunteer for this trial. (MND Connect could, hopefully, refer possible volunteers)
- There is a new internet resource, myNIV, written by pMND and their carers/families to help others by sharing their NIV (Non-invasive ventilation) experiences.
MNDA?has appointed the Institute of Health and Wellbeing at the University of Northampton to conduct an evaluation of the Wheelchair.
As part of this evaluation, we are seeking feedback from wheelchair users or carers on their experiences of mobility assessment and wheelchair provision from their local wheelchair service.
This will take the form of a questionnaire which should take 10-15 minutes to complete.
We would like as many wheelchair users as possible to participate in the survey as it will be of great value not only to our evaluation, but also to gain more information on wheelchair provision in general.
The following is a link to the questionnaire: https://northampton.onlinesurveys.ac.uk/wheelchairprovisiononlinesurvey
Please add this link to newsletters, websites etc. to publicise as widely as possible. For queries about wheelchair provision, please email: email@example.com
For more about the Wheelchair Project http://www.mndassociation.org/wheelchair-service
THE UK MND DNA Bank was set up in 2003 to find out more about the causes of MND, using DNA from donated samples.
Now, thanks to exciting new developments in research, the samples will soon be used more widely to further our understanding of MND.
Our DNA bank consists of over 3,000 samples, which were donated from people with MND, theirfamily members and healthy participants.
The exciting changes
Originally, we collected two blood samples. One was used to extract DNA, which is now stored at the University of Manchester. The second blood sample was sent to Public Health England in Wiltshire, to create an everlasting supply of DNA, which was done by storing the white blood cells from the sample.
Today, MND researchers are just as interested in the white blood cells as they are the DNA. This is because, thanks to advances in technology, these white blood cells can be used to create cell models of MND. White blood cells can be converted into ‘induced pluripotent stem cells’, which in turn can be turned into motor neurones. Creating motor neurones from blood cells was unimaginable when the DNA bank was first created. These models will be used to further our understanding of MND in the lab, but the samples will not be given to patients.
At the heart of research
We know that investing in research is important to people living with an affected by MND. This is why we have agreed for researchers to use the samples in wider MND research studies (more than just genetic research) to help achieve our vision of a world free from MND.
Dr Belinda Cupid (pictured above), Head of Research at the Association, leads on the project. She said:
“We’ve made great strides in discovering the genes that contribute to MND. There’s more to do, and DNA in the UK MND DNA bank will continue to be an important resource.
However, the next step is to understand why the genetic damage or variations cause motor neurones to die, and this means looking at these genes within cells, ideally motor neurones. It is significant step forward that we can use the cells from the Bank for this too.”
Withdrawing my sample
We have made the decision to allow researchers to use the samples more widely, because we believe that those people who donated a sample would want to invest in future research and advance our understanding of MND in order for us to achieve our vision of a world free from MND. However, we recognise that some people may not wish for their samples to be used outside of genetic research. Therefore, if you would not like your sample to be used in this way, or you would like more information, please contact the Research Development team on 01604 611880 or firstname.lastname@example.org.
As promised here is an update about the medical research Mark and I undertook at the University of Oxford, for Dr Martin Turner this week.
Mark and I spent the first afternoon in the MEG scanner. Apparently there are only 8 of these in the UK. It was like an MRI scanner but instead of lying down in it you sit with the scanner coming down around your head. Like an old fashioned salon hair dryer you would have seen in the 50s. You have electrodes taped to your arms, face and head. These record your eye movements and finger movements. You are asked to follow an arrow on the screen, if it points left you lift your left index finger, up and down on a LED control pad, but only if the next light is green. If red you don’t move. Not as easy as it sounds I can assure you. this was looking at changes in your brain in response to thinking and action.
The second day was time in the MRI scanner. I had an extra test with a different coil and helmet. This was to measure different chemical changes in the brain, over the whole brain. If you are even slightly claustrophobic this isn’t a test for you as you have to send time in the scanner continuously.
Below is a link to Dr Martin Turners BioMOx project which is the study we took part in.
<a title=”Progress in the Oxford BioMOx project: Pattern of degeneration identified using advanced imaging techniques in the brains of people with MND that is linked to the level of disability.” href=”http://www.mndassociation.org/2866b9aea41d410db99db945e625fbd2?site=283fc445-39c4-4d60-8bbc-3bd9e5e54ec1″ target=”_top”>MND Association: Progress in the Oxford BioMOx project</a>
Everyone who was at this year’s Annual MND Conference in September, will have heard Professor Kevin Talbot’s call to arms. He wanted volunteers to give up time to take part in biomarker studies. People with MND, people without MND, people with related disorders, hereditary MND patients. He wanted everyone.
Following our visit to the Oxford MND Centre earlier on in the Summer, we have volunteered to take part in Dr Martin Turner’s biomarker study into motor neuron disease.
We are having two brain scans, a MEG scan and an MRI scan. ?As I am the same age as Mark, I am useful for the study, as a healthy volunteer. Anyone who knows me well, will be laughing at this point….
The purpose of the biomarker study is to discover a test to speed up diagnosis of MND, to see how the disease spreads, and to monitor its activity. This may lead to more targeted drug treatments in the long term. Well here’s hoping.
It will be great to be at the cutting edge of MND research and to be in Oxford.
I’ll let you know how we get on.