'Brain Research in Ireland' Conference

Thursday March 12 2015 11:07 AM

Happy Brain Awareness Week!

Take a minute to celebrate how hard your 100 billion neurons work to keep your cranium ticking over. To put it in context, you have more neurons in your brain than there are stars in the Milky Way! To mark this annual event, MS Ireland asked me to attend a conference on Brain Research in Ireland and report back on what I learned.

I won’t rehash what Emma Rogan said the other day in her excellent blog on Neurology in Europe. Suffice to say that in 2015, there considerable challenges facing the Irish Neurological research industry.

The biggies are:

Subject matter complexity
Lack of funding
Emigration
The existence of silos

I was quite surprised to learn that 22% of Brain Research funding comes from charities. As major stakeholders, charities like MS Ireland are enabling the medical world to get closer to that illusive cure. And so we should! Without adequate funding, medical advances will be delayed or overlooked. As a person with MS, I have plenty of skin in the game and want to contribute in any way I can to beating it.

One panel member, Dr Graham Love said that people with brain diseases in Ireland should take a leaf out of the IFA’s book and use one voice to ask a common question. “Why is it that the brain receives so little funding in Ireland, in comparison to other illnesses?” Did you know that brain disorders cost the state three times more than cancer? He reckons that the Government’s primary focus will shift from jobs to health over the next few years and we need to stake our claim in a unified and consistent manner. Lobbying your local TD really has been shown to be effective for this.

All the movers and shakers in the world of Irish Neurology were present at yesterday’s conference. I was encompassed by brilliant minds. I wanted to ask them so many questions!

What would you do if you got MS?
When do you think you will find a cure?
What can I do to help?
How it can be that my friends get prescribed drugs and then they are taken away because they are not deemed cost effective?
Why aren’t there more fatigue management drugs available to MSers?

While I am trying to be a 'patient' patient and listen to what is being said, I feel like I have been hit by a tsunami of baffling information.

The presentation I was most impressed by was on “Patient Involvement in Clinical Research” by Eibhlin Mulroe from IPPOSI. IPPOSI’s vision is one where state of the art innovations in healthcare are available at the earliest stages to patients in Ireland. Eibhlin stated how important it is to talk to the market before choosing a research direction. If scientists were making a shampoo, the first thing they should do is check with the customer if they would actually want to buy it! Irish patients need to be engaged at the decision making process, rather than at the clinical trials phase. If the patients are the ones taking the risk in trials, they should be asked their opinion on the direction brain research is taking. Until yesterday, I had never heard of IPPOSI. I am delighted that they exist and can’t wait to find out more about them.

Well, it’s safe to say that I was blinded by science at yesterday’s Brain Research conference. I don’t think that there was many other patients’ there- although entrance was free and the atmosphere was welcoming. One of the speakers quoted Seamus Heaney- “Hope must be maintained”.

I will definitely return next year. Hopefully- we will have a cure by then.

Author: Joan Jordan

Tags: ms, brain, research, brainawarenessweek, neurology

Comments

Willeke

Thursday March 12 2015 13:09

Once again a brilliant post, Joan. Subject matter totally interesting and now beating myself up for not being able to join.

People should let their voice be heard by indeed being angry about lack of official funding by contacting their local TDs etc. I'm sad to hear that this is also the case in regards to brain research, and surprised that so much funding is gathered from charities. It's sad that people like you, me and many others have to sponsor for "our own bit of research" as it were.

Like you say, people with MS and other illnesses are included very early on in the research processes, and they have to run their own campaigns and/or join others, as this is something that we can influence positively.

In a perfect world we should not have to raise our voices, get angry and annoy those in government, but I for one am all too happy doing so until services are funded, reignited and until people with disabilities get what they should.

Joan Jordan

Thursday March 12 2015 15:37

I was shocked at how much funding is provided by charities too Willeke! On the plus side- surely we should have leverage as a result? Wish you could have made it. Next year!

Niall

Thursday March 12 2015 15:54

Another great post, Joan. (Better than ever!)
It sounds like the conference was interesting, informative and well worth attending.
Well done on the write-up, and I'm looking forward to more as the year progresses.
xNiall