MS Ireland
Informing, Supporting and Caring for the MS Community
‘Making Ireland the Best Place to do Multiple Sclerosis Research’ Report Sets Out Next Steps for the Improved Access to Treatments and Novel Therapeutics To mark World MS Day on 30 May 2018, MS Ireland, supported by Novartis, will launch a new report which is intended to help create ...
Published by MS Ireland on Wednesday May 30 2018 05:45 PM
MS Research Explored Please join us on World MS Day Wednesday, 30th May 2018 for a research information event in Tercentenary Hall, Trinity Biomedical Sciences Building (TBSI), Pearse Street, Dublin 2 @ 6.00pm - 8pm Agenda/Speakers - Launch of MS Research Report - How Clinical Rese...
Published by MS Ireland supported by Novartis on Tuesday May 29 2018 09:11 AM
Kiss Goodbye to MS, 18th - 21st May with Costa We are delighted to announce Costa are joining MS Ireland to help Kiss Goodbye to MS. The weekend of May 18th - 21st will raise awareness of Multiple Sclerosis and funds for MS research. Hope to see you there!! Drop in to a participating store near...
Published by MS Ireland/Costa Coffee on Thursday May 17 2018 11:37 AM
Sensory Café Captures Customers ‘Experiencing’ Multiple Sclerosis (MS) Symptoms Captivating video unveiled to show the day-to-day impact of living with MS A sensory-experience café popped-up on Exchequer Street, Dublin 2 on Wednesday, 28th March, to give customers a tr...
Published by MS Ireland/Roche on Friday March 30 2018 12:19 PM
MS Ireland publishes new report on disease modifying therapies In September 2017, MS Ireland conducted a survey on the perspectives of Irish people with MS on disease modifying therapies (DMTs). 236 people completed the survey. Today (Friday, 29th March 2018) we published a report of the finding...
Published by MS Ireland on Thursday March 29 2018 09:00 AM
'Words for the newly diagnosed from people living with MS’ – new book by Joan Jordan MS & Me Blogger Joan Jordan has produced a new book for people newly diagnosed with MS, called ‘huManS' – Words for the newly diagnosed from people living with MS’. The book wa...
Published by MS Ireland on Wednesday March 28 2018 11:53 AM
Minister for Health Simon Harris has agreed to meet with MS Ireland regarding ocrelizumab MS Ireland welcomed the news this morning (Wednesday, 28th March 2018) that a spokesperson from the office of Simon Harris has agreed that the Minister will meet with representatives from the organisation &...
Published by MS Ireland on Wednesday March 28 2018 10:20 AM
Due to the weather warnings from Met Eireann the Regina Nathan concert scheduled for Friday evening (March 2nd) has been postponed. A new date will be announced shortly. For more information please contact Caitriona Hughes: caitrionah@ms-society.ie An evening of music and song Longtime MS...
Published by MS Ireland on Tuesday February 27 2018 09:35 AM
Save the date MS Ireland will host the annual National MS Conference on Saturday, 22nd September in the Radisson Hotel, Athlone, Westmeath. Stay tuned for updates...
Published by MS Ireland on Friday February 09 2018 10:31 AM
Recruitment for Pilates research project is now closed Karl Fleming, a Structured PhD student, along with Dr. Matthew Herring (Department of Physical Education and Sports Sciences) and Prof. Susan Coote (Clinical Therapies Department) of UL are seeking your participation in a research project ex...
Published by MS Ireland/University of Limerick on Wednesday January 24 2018 10:33 AM
Next week, 11th to the 17th June, is Carer’s Week in Ireland. We’re delighted to have Guest Blogger Gemma Donnelly Cox writing about being a Carer and how she balances life in the ‘here and now’ while also planning for the future. Caring, for me, is about enabling and empowering my husband to live the life of his choosing to his highest potential. Simple, eh? I’m not so sure. Over and over again, I am torn between goals that, at times, conflict. And I’ll bet this happens to every carer; maybe not the same goals but tension nevertheless. Currently, the ones that preoccupy me have to do with timing and with attitude. When I say timing, I mean whether to focus on the present or the future. A whole lot of enabling and empowering is about making the most of every day; doing today’s work today. Right now, I’m typing this blog and Alexis, my husband, who is quadriplegic with progressive MS, is using voice control software to work on his computer. Our son has just left the house to go bouldering at the climbing gym up the road. We are all enjoying the here and now this afternoon. Much of the time, however, I feel as though my focus is planning for the future, leaving little room for the present. So much thought goes into what I know lies ahead and also to planning for the unknowns. What if Alexis’ voice starts to weaken further and he can’t use voice control software? Should he be using eye control now, just in case? But what if his eyesight starts to fail? Worries about the future can rob you of ‘the now’ as you flail around trying to prepare for what might emerge. But if you only stay in ‘the now’, you could very well end up not being ready when one of these MS issues suddenly rears its head. Right up there with timing is attitude. It seems to me that so much of what is joyous in life is about knowing when things are good, celebrating them and being grateful for them. Like right now blogging about how it feels to be a carer. A lot of the time, however, gratitude for the good things can be in tension with putting mental energy into staying vigilant and being ready to advocate. For example, Alexis was recently invited to a dinner with people who know a lot about MS. I was looking forward to going with him and slacked up on my usual advocacy of making his requirements clear to the hosts. I figured that people in the know would get it right. Wrong. The hosts invited a quadriplegic guest seated in a large wheelchair to a venue where the tables were way too low for his chair. The path to the (too small) space at a table- in the middle of a room, full of seated diners- was impossibly narrow. It does not have to be like that folks! It’s hard to be grateful for a nice night out when your husband can’t reach the table and your advocating would have made it different. When I feel I’m getting the balance right managing the tension between timing and attitude, I am far happier and more confident in my Carer role. But before I sign off, I’d like to add one more tension, the one that can arise between caring and self-care. During Carer’s Week, we’re reminded that Superwomen and Supermen stay sharper when they take care of themselves. I was reminded of this back in the autumn when I was away for the weekend by myself (a super duper self-care step) and I came across a young couple in their 20s. The carer in the partnership was a real Wonder Woman. But she was wrecked tired, more tired than I remember being at her age and stage. I had time on my hands and tried to help out. She knew I was up to the job but she simply couldn’t let herself stop. Carers, none of us last forever but if you want to be in for the long haul and really make a difference for your loved one, you’ve got to take care of yourself too. For many carers, I guess that’s the hardest thing. Gemma and Alexis Donnelly live in Dublin with their son Finn and Labrador Retriever, Elmo. In 2016, Alexis joined the Scientific Steering Committee of the Progressive MS Alliance. His carers have supported him to fulfil his role in the Alliance. For more on the Progressive MS Alliance and the exceptional work that it does in pursuit of its aim to understand and overcome some of the biggest barriers to treatment development for progressive MS, see www.progressivemsalliance.org
This week Niamh McCarron shares her experience of having MS and working. Read on for her story of working and striving to stay professionally active and financially secure. As I write this blog post I am on my way to a conference for my day job. This is a good example of how my work and MS life are intertwined. I am often “robbing Peter to pay Paul” timewise, energy-wise and pain-wise. The truth is, most people have to work, there are very few of us who have the resources to pack it all in and retire at 30 or 40. For people with MS, I think most of us plan (and hope) to work for as long as we can. Of course as illness progresses, this choice can be taken away from us. I am writing this post from the fortunate position of still being well enough to work,. I’ve blogged about my MS Fears before. One of the things I am afraid of is having to stop working. I’ve been working in the same company for more than a decade and have built a solid career for myself. I work hard, I enjoy what I do and I am part of a great team of people. Giving up work would have a massive impact on my household financially, but it would also take away my independence and part of my social life too. I’ve had to make some adjustments over the years and I’ve occasionally had to ask work to accommodate me where possible, and reasonable, to do so. Because I was diagnosed while working here, my colleagues have known about my MS as long as I have. I think that has helped. I didn’t have to tell them about it, it just became part of me and my life. I understand why others might feel that they can’t or don’t want to disclose their MS to their workplace. It’s a very personal choice to make. For me it would have been an extra layer of pressure to deal with, so I am glad they all know. Plus I am a blabber mouth and have blogs all over the place. It’s not exactly something I can hide at this stage! In 2016 MS Ireland launched a set of Employment Resources to support people with MS and their employers. I encourage people to have a read through them, particularly if you are considering disclosing your MS at work. There are some great tips from others with MS as well as practical advice on what you can reasonably expect from your employer (and what an employer can do in terms of reasonable accommodation for a member of staff with MS). I also think it’s great to highlight that so many of us are working away in our chosen jobs. MS doesn’t always mean the end of life as we know it. I plan to still be here in the next 10 years, hitting the snooze button for “just 2 more minutes” and dashing about the place trying to juggle work, home and other commitments. I’m determined to try, for as long as possible! Links to Employment resources: https://www.ms-society.ie/blog-articles/2015-launch-of-employment-resources Working With MS - Employment Resource for People With Multiple Sclerosis Working Out MS in the Workplace - A Practical Toolkit for Employers Multiple Sclerosis and Employment - Facts and Figures
‘Making Ireland the Best Place to do Multiple Sclerosis Research’ Report Sets Out Next Steps for the Improved Access to Treatments and Novel Therapeutics To mark World MS Day on 30 May 2018, MS Ireland, supported by Novartis, will launch a new report which is intended to help create an MS research landscape that will put Ireland at the forefront of MS research, innovation and therapeutic application.[i] The report aims to support researchers and provide people with MS and the public with a better understanding of the research process and ongoing research. Some of the recommendations include the establishment of an MS Research Community, improved data and information sharing, greater involvement of people living with MS, potential funding models, and improved dissemination of research findings. The community will help overcome obstacles to research such as gathering samples, establishing a biobank and a patient register. The report defines a number of key asks as follows: Creation of a Facebook Workplace platform where researchers can contact each other, share information and seek opportunities for collaboration; Establishment of a Public Patient Involvement (PPI) network of people with MS who researchers can contact for assistance with designing studies and grant applications; Raising awareness with researchers that MS Ireland is available to partner on funding applications; Seek opportunities with academia and industry to establish an MS registry; Increasing state investment in medical research, including increasing funding for the Medical Research Charities Group and the Health Research Board Joint Funding Scheme for medical research charities; Establishment of an MS patient registry and the development of a national policy framework and infrastructure for the development and maintenance of patient registries; Prioritising implementation of The Health Information & Patient Safety Bill and The Human Tissue Bill. “Given the prevalence of MS here, Ireland should be leading the way in MS research. The report launched today gives us a blueprint of what needs to be done,” says Ava Battles, CEO of MS Ireland. “As a first step, we want to establish an MS research community collective to bolster Ireland’s current research strengths to obtain more funding and improve research visibility. While the top priorities in MS research are currently being addressed, this could be done better if the MS community addressed them as a collective.” Dr Claire McCoy, RCSI, said, “Research offers people living with MS real hope for improvement both in their treatment but also in their quality of life. I am delighted to support MS Ireland in speaking at their public meeting that will help bring people up to date with progress that is being made. The report also lays out a clear pathway that will help to overcome some of the issues that have been faced and I would urge people working in the treatment of MS to get involved as the recommendations are rolled out.” Commenting on the launch of the report, Loretto Callaghan, General Manager & Country President, Novartis Ireland said, “We are committed to working with MS Ireland to help raise awareness on the importance of research. Research plays a major role in progress so understanding the barriers that exist is the first step in devising a plan that will help to overcome these issues in the future. We believe that Ireland can become a leader in MS research and look forward to collaborating further with MS Ireland to deliver the recommendations of the ‘Making Ireland the Best Place to do Multiple Sclerosis Research’ report.” This report was compiled following a meeting with a mix of stakeholders interested in MS research in Ireland, including patients, doctors, scientists and nurses and was facilitated by Novartis Ireland in November 2017.
MS Research Explored Please join us on World MS Day Wednesday, 30th May 2018 for a research information event in Tercentenary Hall, Trinity Biomedical Sciences Building (TBSI), Pearse Street, Dublin 2 @ 6.00pm - 8pm Agenda/Speakers - Launch of MS Research Report - How Clinical Research is Bringing Us Closer to Understanding MS: Professor Orla Hardiman, Trinity College Dublin - The Patient’s Voice – Bringing Us Closer to Research: Joan Jordan, EUPATI Graduate, European Patients’ Academy - Bringing Us Closer to Research in Ireland: Dr Claire McCoy, Royal College of Surgeons Ireland Can't make it to the lecture? Don't worry - the presentations will be streamed live on the day of the event, you can access the link below on Wednesday, 30th May at 6pm https://webcastireland.com/w/live-broadcasts/ originally published 1st May 2018
The East Wicklow branch of MS Ireland invite you to the launch of First Flight, an anthology of poems and short stories by Greystones Scribblers (Boland Press). Greystones Scribblers were established by East-Wicklow branch of MS Ireland over nine years ago and First Flight is their inaugural publication. The project, facilitated by Carol Boland, has resulted in an inspirational book of well-honed pieces which will amuse and entertain, and sometimes pull at the heart strings. First Flight will be launched by Minister Simon Harris TD on World MS Day, Wednesday 30 May 2018 in the Glenview Hotel, Wicklow, at 7 pm. Profits from the sale of the book will be donated to MS Ireland's National Care Centre We look forward to seeing you there.
World MS Day brings the global MS community together to share stories, raise awareness and campaign with and for everyone affected by MS. Getting involved is easy! See how you can make a difference!
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20 June 2018: Physiotherapist designed and led exercise programme for people with MS.
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