The week that’s in it, Emma Rogan takes a brief look at brain research and the importance of researchers and people with MS working together.
“Knowing how our brain works is the only way for us to understand ourselves, the world we live in, how we perceive external events, how we feel, and how we remember”. Jes Olesen, Gunilla Öberg and Per Vestergaard.
As this is Brain Awareness Week - an important week of the year for anyone affected by a neurological condition- this article is a short trip into the research side of it. During the week there will be events about a range of topics around the country. There will be wellness days, lectures, events, media attention and acknowledgment of the importance of the human brain. It is also a time to reflect on what is going on in the realm of neurology, neuroscience and taking a patient perspective on the medical announcements that appear our screens every so often. When will that research-breakthrough, recently announced in Trinity, start to impact people with MS?
- 1 in 3 people are expected to have a brain disorder in their life-time
- Multiple sclerosis costs €15 billion per year to Europe. €5 billion of this lost when people leave the workforce.
- The cost to Europe of brain-related disorders is approximately €800 billion per year.
The European Brain Council is a network of researchers, companies, patient organisations, neurologists and students that attempts to promote brain research in Europe. There is a huge discrepancy between the societal cost of brain and neurological illnesses and the amount of funding provided to brain research. MS ‘costs’ Europe €15 billion every year (€5 billion lost due to people dropping out of the workforce). Add to this Parkinson’s, Alzheimer’s, Huntington’s, Motor Neuron Disease, stroke, mental disorders and a multitude of other diseases cost €800 billion every year.
Patient Centred Research
Healthcare technology and information has changed dramatically as we have become better educated and have more information available. Historically, patients were objects of study, used to support development of scientific understanding and treatments. Good for the researchers but what about the patient’s disease? Now patients are active participants, instrumental in disease management and slowly there is a move towards patients being at the very centre of research from development stages right through to the end. When studies are made, people with MS need to be at the table from the very start, not just tacked onto the end for a consultation.
This was supposed to be a piece about the Neurology and Europe, about discovery and innovation but I can’t continue. This was supposed to be a piece about how brain research in Europe was beginning to receive the attention and the funds necessary to study and investigate the mass of connections that is so important to human existence. But it can’t be because yet again people with brain conditions are fighting for scraps. People with brain conditions are being silenced, over and over again.
As I write this the Neurological Alliance of Ireland (NAI) an organisation that lobbies, raises awareness and campaigns on behalf of people with neurological conditions in Ireland, is under serious threat. Last year’s interim funding is quickly running out (July is closure date). The organisation has been through two reviews, probably jumped through many hoops all to validate and confirm that the work they do is valuable to the 700,000 people affected by neurological conditions in Ireland.
Brains are important – vital in fact! Many readers know how devastating it can be when diagnosed with a brain condition and have to live with loss. The NAI and the organisations it represents empower people with MS and other conditions to continue focusing on abilities. What is proposed will shut down the voices that highlight the issues for thousands of people in Ireland. For you and for me.
Get involved with the NAI and lobby your local TD, get in contact with the Minister for Health and stop the closure of this patient organisation.
- Neurological Alliance Ireland
- European Brain Council
- Trinity Neuroscience
- Disorders of the Brain: Costs, recent progress and future possibilities - Jes Olesen, Gunilla Öberg and Per Vestergaard