Multiple Sclerosis Ireland is the only national organisation informing, supporting and representing the MS community. Our concern is the adequate provision of state services, resources and entitlements for people and families living with MS. We believe that the State and its structures and organizations should sufficiently address the needs and rights of people affected by MS.
Where services, resources and entitlements are unavailable or inaccessible, MS Ireland aims to highlight the deficiency and take action to sove the issue.
We represent the issues and concerns of people affected by Multiple Sclerosis (MS) on two levels:
We provide support through our Information Line service and community support worker network in order to deal with individual issues. Our team of Regional Community Workers assist individual clients to access services, resources and entitlements in their own locality. Contact your nearest Regional Office for more details.
The Board, Chief Executive and her team represent the MS community on collective issues at a national and international level. These are the issues which affect the entire MS community irrespective of individual circumstance or geography.
We believe it is crucial that a collective voice for people affected by MS is heard in response to national policy decisions in order to ensure the interests of the MS community remain represented.
To learn more about the issues facing the MS community and the advocacy/campaigning work of MS Ireland or to raise your issues and concerns contact email@example.com
Join longtime MS Ireland supporter Deric Hartigan as he leaves the 3e studios to MC a charity night for us in Balbriggan. Joining him will be a set from singer Joe McCaul and band Proper Order in what's sure to be a night for your diaries! Where: Bracken Court Hotel, Balbriggan Date: 27th September Time: 8pm onwards Tickets are available from the event organiser Olivia: 086 804 9821 Tickets will also be available from several shops in Balbriggan so kepe an eye out!
Submissions now being accepted for 2015 Calendar Following on from last year's incredibly successful competition where we discovered that there are hundreds of talented photographers across the country, we're delighted to announce that we are on the hunt for images again! We’re looking for images from your local community which showcase our beautiful country at its best. Get snapping around your area and enter our competition today! Winning entrants will see their image in the following places, in addition to the calendar: Our MS news magazine which is sent to 5,000 members, clinics and health professionals around the country A special edition of our eNews, sent to 5,500 people Throughout our social media profiles – Facebook, Twitter and YouTube Images will be framed and displayed in our MS Care Centre in Dublin which welcomes hundreds of residents, family members, funders and supporters each year Individual images will be available for purchase in our online shop. See full details and enter here. Good luck!
Recently I took a trip with some of my fellow bloggers to Lisbon. During a chat over coffee with one of the ladies the subject of "When I was diagnosed" came up. It inspired me to go rooting though my college boxes when I got home and I found a notebook I had while I was going through the diagnostic process. When I think back to that time I tell myself that I remember every thought and every feeling I had. Well it turns out that I don't. When I was reading over my written ramblings I felt as if it was written by a different person. Life really has moved on so far in the short 3 years since I was diagnosed. I read about the fears I had, the feelings I experiences and the thoughts that came to me. The trauma of the diagnosis had given me such a distorted view of my life and my future. I thought I was fine, but looking back it was an extremely traumatic time in my life. I was wasting energy thinking about something that might never happen. This got me thinking about the advice I would give myself if I could magically send a letter to the past. Here is my letter to me: Dear Me, You were semi-prepared for today. You prepared for the worst while hoping for the best, and (as you think) 'as usual' it has turned out to be the worst. Turn off your phone for a few hours and give yourself a chance to absorb what's just happened. The outside world can wait. Everything is going to be alright. You are going to regain 20/20 vision, so that lovely image in your mind of yourself with secretary glasses will have to wait for a while. This is a scary time, allow yourself to feel the way you feel - there is no right or wrong way. Let your family know how you are feeling. They just got the news too… they are all feeling for you and wishing that it was them and not you. But it is you, and you are the one who is glad that it's you and not one of them. They are always going to be there to help out. They will do their best to support you and make sure that life goes on as normal. Share with them; let them know that you are allowing them on this journey with you and that you won't hide any symptoms or feelings from them. They will worry twice as much if they think they have to guess how you might be feeling. Just be open and honest and then they know the situation and they can help you more effectively. Keep going with college, there are only a couple of months left. You'll have to fight for it because you will be asked to defer, but keep going, you'll do it, don't give in. Do what’s best for you and not what's easiest for someone else. Don't pre-empt what 'could' happen. So far so good, nothing you were afraid of has happened to this point. Remember that MS could have no affect on you for quite some time. Take each day as it comes and try not to worry so much. You will look back and think it was ridiculous to worry the way you did, and you'll feel like the diagnosis was small in comparison to the emotional turmoil you put yourself through by worrying about something that might never happen. Forget the idea in your mind of what you think MS is. It's not something that is associated with older people. I know you are scared at looking at the possibilities of the future, but you'll change your mind on this. You will read and research tirelessly and you will begin to love it. Information is power and you will crave it. Get in touch with the MS Society. Engage with the community, they have all been where you are now. Don't be afraid to look at information, you will benefit from reading it and the fear that you have now will turn into knowledge. Instead of feeling like MS is unpredictable you will feel that knowing the possibilities puts you back in control. Instead of focusing on the negative elements of this, look for the good in it. In fact take that as general life advice and not just in relation to MS. It will make you a lot happier! Trust yourself and trust your judgement. No doctor has experienced things the way you have. Nobody has experienced your experience, so you are the expert here. If you disagree or don't understand something fully, ask, question, interact with your doctor/nurse. They can't answer questions you don't ask. Remember, that you are in charge here, you are taking advice, but your decisions are your own and you need to be the one to make them. You can't expect someone else to make the decisions ahead of you, even though you would like to pass on that responsibility, you really do need to own it. It will make you stronger. Know that medications are there but it doesn't mean that you have to take them. If you don't want to, discuss that with your doctor. Tell them how you are feeling about it. You don't have to feel in a rush to make a decision on a treatment plan, that all work long-term so don't feel under any pressure to push yourself into a decision. Take your time, relax and breathe. Aoife
Biogen Idec has provided this update about Fampyra, following changes to its availability in July. "Now that Fampyra is commercially available, the free of charge supply must come to an end so other patients can access this product. Hence, the programme ceased enrolling new patients in January 2013 and has now ended for all patients as of 1st July 2014. Despite this, between the time the decision was reached and its implementation, Biogen Idec has continued to supply Fampyra in Ireland via the Named Patient Supply (NPS) route sometime to allow sufficient time for patients wishing to continue treatment to be notified in order for them to make alternative funding arrangements and to allow them time to discuss this situation with their neurologist. Due to patient and physician demand for this product, Biogen Idec made the decision to make the drug commercially available so patients outside the NPS programme would have access to this product. Biogen Idec applied to the Irish Department of Health and HSE for reimbursement of Fampyra. However, in early 2013, Biogen Idec received notification that the drug would not be reimbursed. Given that Biogen is committed to make this drug available to Irish patients, Biogen Idec is continuing to work with the HSE to ensure that eligible patients with MS in Ireland can receive Fampyra. Recently (July 2014) Biogen Idec made a new pricing submission to the HSE. which is not possible to comment further on since discussions with HSE are still taking place. While it is now fully available, any patients wishing to receive treatment will be required to either make alternative funding arrangements or to self-fund their treatment." Further reading MS Ireland Media Centre Fampyra Information Sheet
Aubagio given green light in Ireland MS Ireland welcomes the news that Aubagio (Teriflunomide) has been made available in Ireland. The treatment is now available under the HSE High Tech Drug Scheme, as of 1st August 2014. Aubagio 14 mg is a once-daily, oral therapy indicated in the European Union for the treatment of adult patients with relapsing-remitting multiple sclerosis. “This is an exciting development for the MS community in Ireland who face daily challenges from their debilitating disease. The availability of Aubagio, as the first oral, once-daily, first-line medicine for the treatment of relapsing-remitting MS, offers an alternative to repeated injections which for many patients can be a real burden on top of their symptoms,” commented Ava Battles, Chief Executive MS Ireland. Ms Battles continued: “MS Ireland believes people with MS should have access to all and any appropriate and licensed treatments that would improve or assist in the management of their condition.” RRMS accounts for approximately eighty-five per cent of all initial diagnoses in MS. Approximately 250 people are diagnosed with MS every year in Ireland, with over 8,000 people directly affected by the condition. The majority of people with RRMS experience approximately one to two relapses per year. Around half of all relapses may leave people with lingering problems and disability may accumulate over time. Aubagio’s availability in Ireland marks an important step in improving the standard of care available to people with MS. “Having been involved in the clinical trials for Aubagio, I am delighted to see this new treatment option now available for physicians in Ireland to consider with their patients. Multiple Sclerosis as a disease and living with its effects has a huge impact on people with MS and those around them. New treatments which try to reduce that impact, such as the availability of a once-daily oral medication like Aubagio, are welcome.” commented Dr Benjamin Turner, Consultant Neurologist at Barts Health NHS Trust, London.
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