MS Ireland
Informing, Supporting and Caring for the MS Community
Three newly elected committed and passionate people join the board of MS Ireland MS Ireland's 2015 Annual General Meeting (AGM) was held on Saturday, 26th September 2015 at the Red Cow Moran Hotel, Dublin. One of the highlights on the day was the election of Maurice O' Connor and Rory Mulca...
Published by MS Ireland on Wednesday September 30 2015 10:32 AM
MS Ireland raises topical issue On Friday, 23rd May MS Ireland featured on RTÉ's Morning Ireland and the Six One News to voice rising serious concern about how the changes to the accessibility of Fampyra will affect the lives of people with MS. People receiving Fampyra, for the symptomat...
Published by MS Ireland on Monday May 26 2014 11:41 AM
BG-12 will be available in Ireland in 2014 The European Commission has approved the use of Tecfidera (dimethyl fumarate/BG-12) as a first-line oral treatment for people with relapsing remitting Multiple Sclerosis (RRMS). The new treatment will be available in Ireland later in 2014 and we will p...
Published by MS Ireland on Thursday February 06 2014 04:46 PM
Date for your diaries! World MS Day (WMSD) will take place on Wednesday, 28th May and we have to say we're already looking forward to it! As you may know this is one of the highlights of our year and all the hard work that goes into preparing for the big day pays off when the whole world comes ...
Published by MS Ireland on Saturday January 11 2014 12:00 PM
Fresh cuts met with shock Following the surprise cuts to housing supports this week MS Ireland joins other representative groups for people with disabilities and the elderly across the country in criticising the move. The cuts affect people with disabilities in two areas: the housing adaptation...
Published by MS Ireland on Thursday January 09 2014 11:07 AM
LTIS now open to people with MS MS Ireland is encouraging our members who currently hold a medical card to apply for the Long Term Illness Scheme (LTIS) following recent changes to the scheme by the HSE which allows those with a specified illness – including Multiple Sclerosis – to h...
Published by MS Ireland on Wednesday January 08 2014 11:56 AM
MS Ireland is saddened to hear the news this morning that Marie Fleming has passed away, having lived with Multiple Sclerosis (MS) for over 25 years. We would like to send our deepest condolences to her partner Tom Curran and her family. Ms Fleming’s landmark right-to-die case was initiall...
Published by MS Ireland on Friday December 20 2013 12:22 PM
Deal Effect Aims To Help You Give Back 11 MS Ireland is proud to be a founding charity of Deal Effect, a brand new daily deals website with a twist. Just like many of the popular deals sites out there at the moment, Deal Effect offers new and exciting deals tailored to your interests on a daily ...
Published by MS Ireland on Friday October 11 2013 12:32 PM
Will you help us fight MS together? The Better Together Video Competition is back and it’s bigger than ever! This is our chance to showcase the amazing work carried out by MS Ireland staff and our MS community. This year we decided to put the spotlight on our MS Care Centre. As you may th...
Published by MS Ireland on Thursday October 10 2013 09:14 PM
MS Ireland welcomed new award winners, board members and volunteers from across the country to its AGM and National Meeting Day MS Ireland’s AGM and National Meeting Day was held in the Hilton Hotel, Dublin on Saturday 29th of September. The day aimed to conduct some of the official busi...
Published by MS Ireland on Tuesday October 02 2012 05:18 PM
Cladribine Tablets receives positive CHMP opinion for treatment of relapsing forms of MS Efficacy and safety data support positive benefit/risk assessment from CHMP Cladribine Tablets is the first and only investigational medicinal product to have shown a sustained 4 years of disease control with a maximum of 20 days of oral treatment over 2 years in clinical trials Merck, a leading science and technology company, today announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has issued a positive opinion for approval of Cladribine Tablets (proposed tradename MAVENCLADTM) for the treatment of relapsing forms of multiple sclerosis (RMS) in patients with high disease activity. “The positive opinion from the CHMP is an extraordinary development for Merck, affirming our belief in Cladribine Tablets as a potential important treatment option for patients living with multiple sclerosis,” said Belén Garijo, member of the Executive Board of Merck and CEO Healthcare. “We now eagerly await the European Commission decision, and the opportunity to make a difference in the MS treatment paradigm. Our sincerest thanks to the entire MS community for their unwavering support throughout the Cladribine Tablets journey.” “We strongly believe in the therapeutic value of Cladribine Tablets and the significant impact this investigational therapy may have on the future of MS care,” said Luciano Rossetti, Global Head of R&D for the biopharma business of Merck. “There are still significant unmet needs for patients with MS, particularly those with high disease activity. We look forward to our continued partnership with the EMA, which has been an invaluable scientific advisor in helping us advance the development of Cladribine Tablets.” The CHMP positive opinion is based on more than 10,000 patient years of data with over 2,700 patients included in the clinical trial program, and more than 10 years of observation in some patients. The clinical development program included data from three Phase III trials, CLARITY, CLARITY EXTENSION and ORACLE MS, the Phase II ONWARD study and long-term follow-up data from the 8-year prospective registry, PREMIERE. The efficacy and safety results of these studies allowed a full characterization of the benefit-to-risk profile of Cladribine Tablets. In patients with high disease activity, post hoc analyses of the two-year Phase III CLARITY trial demonstrated that Cladribine Tablets reduced the annualised relapse rate by 67% and the risk of 6-month confirmed EDSS progression by 82% versus placebo. As demonstrated in the Phase III CLARITY EXTENSION study no further Cladribine treatment was required in Years 3 and 4. The comprehensive dataset has informed the posology and monitoring requirements. The most important side effects are lymphopenia, which can be severe and long-lasting, and infections, including herpes zoster. The CHMP’s recommendation will be referred to the European Commission which is expected to make a final decision on the marketing authorisation application for Cladribine Tablets within 67 days from the CHMP opinion. MAVENCLAD™ is the proprietary name submitted to EMA for the investigational medicine Cladribine Tablets. MS Ireland welcomes the news that cladribine has been approved by the CHMP. Ava Battles, Chief Executive, says, “The development of new medications such as cladribine is of crucial importance in the fight against relapsing remitting MS, and offers hope to those living with the condition. We hope that this new medication will be made available as a treatment option to people with relapsing remitting MS in Ireland as soon as possible.” MS Ireland will closely follow developments regarding the availability of cladribine in Ireland and will keep our members informed of any updates. Further reading More information on the process for making new medications available in Ireland can be found in our Briefing Document
This week Joan Jordan speaks powerfully about the reality of living on a fixed income. She shares with us the value of being honest about financial issues to ensure you don’t miss out on life. I will NEVER lose the thrill of getting my first ever, real, grown-up pay-check. Emergency tax couldn’t dull the buzz of having my own money which I could spend on whatever my 22-year-old heart desired. The cash was mine and the shops were calling. Oasis first! I swanned past the 70% off rail and noticed an avocado green suede skirt winking at me coquettishly. I tried on the timeless classic and handed over the notes. I loved it! Buying stuff with my own money rocked! Since I got diagnosed with MS, I guess I have adjusted my lifestyle considerably. You could say that I am cutting my green suede to meet my measure- which is currently postage-stamp sized. I need to watch out for getting trapped into expensive events where the champagne is flowing and the bill is split at the end. I know the price of everything and the 70% off rail is the only place that is not off limits in Oasis. Digging deeper- having my own money which I had earned myself gave me a sense of worth. Now that I don’t have my own cash, I feel a loss of independence and certainly a huge amount of guilt that I can no longer support my family financially. I have an honours degree in Computer Science from Trinity College and a EUPATI qualification (patient education) but despite many applications, I haven’t even been given a single interview since I got diagnosed in 2010. This gets discouraging after a while and my confidence has certainly taken a bashing. I do worry about the future and how we will manage financially. It’s hard not to. Currently, one ad on the TV really irks me. It’s about Kate and Mick. It’s the last day of their mortgage and it ends up with Kate remarking that despite their trials and tribulations- “We just KNEW we could make it work”. I want to make it work Kate- believe me I do. Sometimes, things outside your control happen and try as hard as you can, it just won’t work anymore…. Having lived on a tight budget for a few years now, my advice would be to take a good look at how you are currently spending your money. Cut out what you consider frivolous but be careful not to launch into full blown austerity. If you really like the branded ketchup- then let it remain on the shopping list. If the fancy coffee to mark the end of the week makes you feel better- then relish every drop and don’t let yourself feel guilty about it. If you get invited to an occasion, be clear that you are covering your own costs. If you can’t possibly afford it- don’t go! If you really can’t make ends meet, talk to somebody you can trust or even your local Citizens Information to check that you are getting all your entitlements. Denying the problem doesn’t help. Have you got any tips on managing your money while living with MS? I would love to hear them. **IPPOSSI, The Irish Platform for Patient Organisations, Science and Industry, is developing a Patient Education Programme in Health Innovation. Apply before the 30th June to take part.
Hello, my name is Caroline Brennan and I was diagnosed with MS in May 2014. I experienced prolonged symptoms both before and after my diagnosis and got no relief from disease modifying drugs- just a selection of side-effects. As crazy as this may sound, I now count my diagnosis as one of the greatest blessings in my life. MS made me dig deep within for life skills that I otherwise may have never acquired. I have been forced to take a thorough inventory of my life and MS has been my toughest but greatest teacher. It has taught me a deep sense of appreciation for both my mind and body and all of the miraculous things that these aspects of me can do. I have chosen to focus my attention on the things I can do and this has served me very well. I treat my body with respect, as if it is an irreplaceable machine and I fuel it with organic, wholesome, nutritious foods. I protect it from chemicals, additives and preservatives and in turn it responds positively. I give it rest when it signals to me that it has had enough and I cool it down at the first sign of overheating. In short, I have learned to listen, deeply, to my body. When I walk I am focused on walking. I am appreciating every successful step I take. When I shower I am focused on showering, appreciating the flow of the water. When I eat, I am focused on tasting, chewing, swallowing. The old me was too busy thinking about the next task to notice the details of these daily rituals and so deeply entrenched in mental chatter that I was totally unaware as to what I was actually doing in the present moment. But that is only a small part of my journey thus far. I have also learned the importance of being very selective in relation to the story I tell about myself. I am me first and foremost. I am not the sum total of my experiences and I am not my MS. It is not the most defining thing about me. I start every day reciting a list of positive affirmations silently to myself. This practise sustains me so well that I would not even entertain beginning my day without reminding myself of all the good things that are housed within myself. Try it! What works for me is: “I am kind, I am loving, I am content, I am hopeful, I am blessed, I am supported, I am looking forward, I am doing my best and I am inspired.” These are just some of my favourites. It doesn’t really matter what the mantra is - the principle behind the concept is that the words “I am” are incredibly powerful. Starting my day in this way uplifts my mood and sets the tone for the day ahead. There are lots of other tips and tricks I have learned along my MS path. Its’ been quite the journey so far and (here’s another affirmation for you…) I am only getting started! PS. I am mother to a five-year-old boy, I am a wife, I am a daughter and I am a practising lawyer. I am also skydiving in support of MS Ireland on 15th July!
Research participants needed You are invited to participate in a study that will evaluate the validity of a speech pathology specific questionnaire for persons with Multiple Sclerosis (pMS). In this study, you are invited to complete an online survey. The questions in the survey will include a range of relevant topics such type of MS, voice quality, swallowing, language, and the state of your social and psychological wellbeing. After two weeks, you will be asked to complete some of the questions again. Who is eligible? Aged 18 years or over; Diagnosis of Multiple Sclerosis; English speaking; Ability to complete the questionnaire. What does this study involve for participants? This survey will obtain information about your overall health status and daily routines. This survey will explore the impacts of Multiple Sclerosis disease on areas like swallowing, speech voice and communication. Participating in this survey is voluntary and we appreciate your time when participating. You have the opportunity to win one of two $50 gift vouchers if you complete the two questionnaires. A donation of $2 will also be made to MS Australia for each completed questionnaire, with a maximum of $500. The questionnaire can be found on: https://www.surveymonkey.com/r/SpeechPathologyMS Further reading Participant Informed Consent Form Ethic Approval Get in touch If you want more information on this project, please feel free to contact Dr. Hans Bogaardt at 02 -‐ 9351 9334 or email: hans.bogaardt@sydney.edu.au. A multi‐page Patient Information Statement, describing the study in detail, is available and will be sent to anyone who expresses their interest in this study. The ethical aspects of this study have been approved by The University of Sydney HREC (Protocol no. 2017/197) Discipline of Speech Pathology Faculty of Health Sciences S Block Cumberland Campus C42, 75 East Street, LidcombeNSW 2141 Australia T +61 2 9351 9539 F +61 2 9351 9163 E speech.clinic@sydney.edu.au
Developing new resources Researchers at Trinity College Dublin have developed four short, animated films about multiple sclerosis. They are looking for people living with MS, people who work with them, and their relatives, friends and loved ones to complete short surveys on the films in order to learn from their experiences of the films and to inform the development of future resources for people with MS. The videos and surveys can be accessed at the below links until Monday, July 17th: Video 1: How does MS affect my brain? Survey 1: How does MS affect my brain? Video 2: How does MS affect my cognitive function? Survey 2: How does MS affect my cognitive function? Video 3: What is cognitive reserve? Survey 3: What is cognitive reserve? Video 4: How can I keep my brain healthy? Survey 4: How can I keep my brain healthy? Thank you in advance - your participation will be invaluable in helping them to improve the resources they develop for people with MS.
Can you imagine the adrenalin rush after jumping out of a plane at 10,000FT? Well wonder no more! Sign up to our Skydive for MS in September 2017 and find out for yourself!
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