The Association has a very keen interest in supporting research, which we have done irregularly in the past as and when funds have become available.
In 2006/7 research was firmly placed on our agenda when it was included as one of our strategic priorities. In 2007 our board of directors agreed to fund a rolling programme of PhD studentships worth £600,000 at 2007 prices. As of 1st October 2008 this fund will be supporting five such studentships, each investigating different aspects of MND.
Each year the ALS International Alliance, of which the Association is a member, holds an international symposium at which clinical and laboratory researchers from around the world can reveal and discuss their latest research findings. The 2008 symposium will be held in Birmingham, UK in early November. An "Allied Health Professionals Forum" runs in parallel with the symposium allowing health professionals from all disciplines the opportunity to “dip into” the symposium sessions while, more importantly, facilitating the exchange notes on advances in good practice as well as research findings across the various disciplines relevant to MND. Follow the link on the right of this page to access abstracts of the papers and posters presented at Toronto in 2007.
Prior to the start of these two events there is a two day meeting of the Alliance’s member delegates where good practice, mutual support and ideas are exchanged between the different participating national organisations.
Surprisingly, more than 20% of research papers published each year and listed on the MEDLINE database relate to the nursing and care of people with MND. Topics included in this 20% were as diverse as the use of non-invasive ventilation for those whose diaphragms are affected by muscle weakness, the support needs of carers, determinants of the quality of life for people with MND, the best ways of managing symptoms, communication and assistive technologies to help maintain independence and what services do people with MND actually need, to name just a few topics.
The other areas of research, which make up the remaining 80% of published papers, include a wide range of topics many of which overlap with each other. For example excitotoxicity caused by glutamate causes influxes of sodium and chloride ions along with water into neurones leading to acute swelling of the cell. These changes can lead to the activation of calcium-dependant enzyme cascades which can in turn lead to an increase in the amount of free calcium within the neurones. As the mechanisms for controlling calcium become destabilised this leads to an uncontrolled cascade of other biochemical pathways including disorganisation of the cytoskeleton. These cascades can cause the generation of free radicals such as superoxide which would normally be neutralised by the SOD1 protein. Ultimately, these changes lead to the initiation of controlled cell death.
