Did you know the MND Association also supports people who have Kennedy?s disease?
In May a?new clinic specialising in Kennedy?s disease opened in?London at the National Hospital for Neurology and Neurosurgery.
To find out more please follow this link.
https://mndresearch.wordpress.com/2015/09/28/raising-the-profile-of-kennedys-disease/
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):
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 research@mndassociation.org.
therapy-directory.org.uk
The Therapy Directory?promotes the benefits of complementary therapy and aims to give visitors all the information they need to help them make an informed decision about whether therapy would be right for them. The website has an FAQ’s section, a number of useful articles written by our members and the facility to search for a practitioner in your area.
To visit the website go to?www.therapy-directory.org.uk
We make no claims about the benefits of these therapies, but feel this is a good place to look if considering such alternative treatments.
Sporty 39 year old Mark Stanton was out jogging on holiday when he cricked his neck. On return he had physio which sorted his neck out, but not the tremors he was beginning to experience in his left arm. His physio suggested going to the doctor. Ten months later, he had the diagnosis of Motor Neurone Disease (MND).
Two to three people in every 100.000 (that?s roughly the population of Crawley) are? diagnosed with MND, a progressive disease that attacks the motor neurones or nerves, in the brain and spinal cord.
?It is a roller coaster, but I try to take every day at a time? says Mark.
?Mark has a lot of inner strength? says his wife Fiona. ?The disease is like a thief that steals from you a bit at a time. So you lose something and have a down period, then you pick yourself up again.?
With the May sunshine streaming through the patio doors of his Folkestone home. Mark describes some of the landmarks in his five year roller coaster journey with MND; stopping playing football, moving and adapting his house, getting a scooter to help with getting around, then a wheelchair. Mark is now preparing to stop work as a print manager at MAF (Mission Aviation Fellowship).
As Mark and Fiona talk, MND specialist Nurse Chrissie Batts is gently encouraging
them. Chrissie works with Dr Karlsson Consultant Neurologist, to manage and co-ordinate the East Kent MND Service; she is the first point of access for all patients and their families. Following initial diagnosis she visits them at home and continues to visit at a mutually agreed frequency – sometimes at home, sometimes at the office, whatever is the right fit for the person she is looking after.
For Mark and Fiona, Chrissie brings specialist knowledge of the disease and the systems and organisations that they need to know about. She makes reassurance, advice or advocacy just a text or a phone call away.
Every month representatives from all the professions who provide services for MND sufferers in East Kent meet to discuss each patient so that all professionals – from Speech & Language Therapy, Occupational Therapy, Physiotherapy, Dietetics, Adult Communication and Assistive Technology – are aware or the changing needs of each individual.
Chrissie has built links with all the professionals at The Pilgrims Hospices through collaboration and attending their multi-disciplinary meetings.
?This multi- disciplinary approach provides expert knowledge so we can manage patients’ conditions and achieve the best quality of life for everyone? says Chrissie.
Shortly after being interviewed for this article, Mark sadly lost his battle with MND after a courageous five year fight.
A Volker 3080 profiling bed, supplied by ?BaKare Beds? no longer required.
A Great British Mobility bed single Salisbury Base c/w a Reflex Foam Mattress in good working order.
If you are interested in either of these items, please contact webmaster@mnda-eastkent.org.uk
