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Research moves closer to understanding the cause of multiple sclerosis A new study has made a major new discovery towards finding the cause of multiple sclerosis (MS), potentially paving the way for research to investigate new treatments. An international team involving the University of Exeter Medical School in the UK and the University of Alberta in Canada has discovered a new cellular mechanism— an underlying defect in brain cells — that may cause the disease, and a potential hallmark that may be a target for future treatment. The study was recently published in the journal Neuroinflammation and part funded by the Royal Devon & Exeter NHS Foundation Trust. Professor Paul Eggleton, of the University of Exeter Medical School, said: “Multiple sclerosis can have a devastating impact on people’s lives, affecting mobility, speech, mental ability and more. So far, all medicine can offer is treatment and therapy for the symptoms – as we do not yet know the precise causes, research has been limited. Our exciting new findings have uncovered a new avenue for researchers to explore. It is a critical step, and in time, we hope it might lead to effective new treatments for MS.” Scientists have long suspected that mitochondria, the energy-creating “powerhouse” of the cell, plays a link in causing multiple sclerosis. The joint Exeter-Alberta research team was the first to combine clinical and laboratory experiments to explain how mitochondria becomes defective in people with MS. Using human brain tissue samples , they found that a protein called Rab32 is present in large quantities in the brains of people with MS, but is virtually absent in healthy brain cells. Where Rab32 is present, the team discovered that a part of the cell that stores calcium (endoplasmic reticulum or ER) gets too close to the mitochondria. The resulting miscommunication with the calcium supply triggers the mitochondria to misbehave, ultimately causing toxicity for brain cells people with MS. Researchers do not yet know what causes an unwelcome influx of Rab32 but they believe the defect could originate at the base of the ER organelle. The finding will enable scientists to search for effective treatments that target Rab32 and embark on determining whether there are other proteins that may pay a role in triggering MS.
Date for your diary 12th - 18th June 2017 The 11th annual National Carers Week will take place from June, 12th to 18th. Events are happening nationwide to celebrate and recognise the role of Ireland’s Family Carers. There are eleven National organisations who are partners in the week and who will be organising events around the country. Partners this year are: MS Ireland, Family Carers Ireland, The Alzheimer Society of Ireland, The Disability Federation of Ireland, Irish Cancer Society, The Irish Hospice Foundation, Acquired Brain Injury Ireland, Care Alliance Ireland, Inclusion Ireland and new partners this year St. Michael’s House and Special Needs Parents Association. Make sure and check out all the details on events being organised in your local area - visit www.carersweek.ie or Facebook. Get in touch You can contact Zoe the coordinator of the week by emailing firstname.lastname@example.org
Campaign update Last year, MS Ireland joined forces with a group of 16 other NGOs calling on the Government to invest in home care services. In January, Minister for Older People Helen McEntee announced that there would be a consultation regarding setting up a new statutory home care scheme that would guarantee home care as a statutory right. MS Ireland has worked with the other organisations involved in the campaign to develop a discussion document outlining the areas we believe the consultation should look at. This discussion document has been submitted to the Minister for consideration. Download Discussion Document Get in touch For any further information about this campaign, please contact Harriet Doig at email@example.com
In our ‘MS & Money' series this week’s blog is from Willeke Van Eeckhoutte. She looks at money, employment and early retirement. Having MS means that unpredictability is part of your life. Like Emma wrote in her first piece about MS and money, “Having MS can affect our ability to earn. Not earning can cause a financial crisis and a financial crisis can affect our peace of mind causing great stress and emotional wobbles.” On my day of diagnosis, my neurologist at Beaumont Hospital, said, “From now on you should change your lifestyle, and work.” At first, changing my lifestyle was not an option. I never realised, though, that on a physical level, my body had already decided for me. Stress and anxiety flood your mind, and immediately you think, “Will I have to give up my job, and if so, for how long?” Retiring from work isn’t an easy question because you don’t want to become a liability to your colleagues or yourself, so it brings a lot of ‘What ifs…” and “I don’t want to lose my…” In fact, it took me a good while trying to find a definitive answer to that question. At some stage, the level of fatigue, trigeminal neuralgia, and other symptoms became a hurdle too many, and even sitting down in front of a computer for an hour in the office had me crying of facial and eye pain. Again, my body had decided for me even though my mind didn’t want to give up any freedom working had given me. Being on a disability allowance or invalidity pension teaches you how to be creative with money. Absolutely, you want to remain financially independent for as long as possible. There are many things to consider, i.e. will you be able to live on the level of income for example, which social welfare benefits you might avail of, can you still do some work or what is the outcome of your occupational doctor’s exams, etc. The prospect of having to rely on a weekly social welfare income is daunting. So many things depend on that social welfare payment because life in Ireland is expensive, and money seems to fly out the front door faster than it is coming in. Bills and rent require rescheduling, and you need to learn to squeeze as much money out of what is left. You can sometimes swap Debenhams for Penney’s or the weekly take away for a monthly one and instead lose weight with healthier food. Try and cut credit cards in two or phone a money advice line that can help you sort out outstanding bills, credit cards or bank loans. If you feel that giving up work is the only option left, do some research beforehand on the Citizens Information website where you can find a checklist for people with long-term illness or disabilities, be aware though that some benefits are means tested while others are not. If you need a hand filling in paperwork related to benefits, you can find a Citizen Information Centre here. Being retired has been the blessing my MS needed. I still have lots of trouble with fatigue despite using several treatment options and trigeminal neuralgia remains an ungentle reminder of my illness. What has been a blessing is that whenever I now feel I need to withdraw to rest because of stabbing facial pain or fatigue, I can do so without an employer telling me to go back to work. It sounds so simple, but it has changed life for the better. Financially, life is a challenge. For example, buying luxurious coats, shoes, and handbags, or buying an expensive new laptop or jetting off somewhere far, far away, now those things belong in the past. But, life is about adaptation. And as time goes on, you begin to realise that maybe you should have retired sooner. It didn't turn me into a wealthy, female version of Richard Branson, but it has given me another chance of starting over. Yes, with less money in the bank, but emotionally stronger and richer than I ever thought possible. If you want to read more of Willeke’s own blog, please check Ireland, Multiple Sclerosis & Me and Twitter
Life Hacks The video is about ‘life hacks’. Life hacks are tips or tricks that help to make everyday tasks easier. For the filming, we’ll need you to hold up a card to camera and record your voice saying the tip (off camera), we’ll provide you with the tip and the card. We need people who can take part in a few hours of filming in Cork city or Dublin either on these dates: Cork - 9th or 15th May Dublin - 8th or 17th May The video will be released for World MS Day on Wednesday, 31st May. Get in touch If you’re interested in taking part please email Aoife Kirwan at firstname.lastname@example.org and we’ll be in touch to arrange the date and confirm the venue. Thanks!
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