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MS Ireland has published our Advocacy Strategy for 2018, which details the actions we will be taking this year to try and address each of our advocacy priority areas. You can download the strategy here Get in touch For comments and questions please contact Harriet Doig, Information, Advocacy and Research Officer at email@example.com
Introducing our team of bloggers for 2018 As promised last week when we said goodbye to some of our long-time MS & Me bloggers, we now begin by introducing you to our team for 2018. While it may feel like January has been ‘blogging about blogging’, we feel it is important to note the changes, growth and evolution which MS & Me is constantly going through. We hope that you’ll welcome our new contributors as well as welcome back some familiar voices to our community. Declan Groeger Back with us but in the new role as Contributing Editor is Declan Groeger. Declan was part of the original MS & Team in 2014. The Cork man has lived with MS for about 30 years and is an avid traveller. He says of himself, “I am older, but not old. Am insanely positive and an eternal optimist.” His personal blog, Accessibility Matters, began in 2013 and offers musings not only about travel with MS, but also his finds for accessible restaurants. We’re happy to have Declan join our editorial team to help shape MS & Me into whatever it may become. Joan Jordan Also returning is Joan Jordan. The Louth native returned to Ireland in 2004 after living abroad for several years. She’s married with two teenagers (and their cat, Tiger), recently returned to part-time employment as the Content Coordinator for EUPATI, the European Patients Academy, and is very excited about that step. Joan is an active member of the Louth Branch of MS Ireland, runs the Humans Multiple Sclerosis community and has a new book aimed at newly diagnosed people with MS due out later this year. Fergal Hughes Father of two boys and currently separated, Fergal Hughes likes films, books and classical music. When it comes to exercise, however, he says it best himself, “I prefer an exercise bike. Unfortunately, I don’t exercise that much… in fact, I don’t exercise. *Note to self: this needs to change*.” Fergal gets a kick out of life and of writing about his experiences. We look forward to reading more of his observations around life, single-parenting, and perhaps getting back on that exercise bike… Christina McDonald 28- year old Christina McDonald has recently decided to return to education and become certified as a primary school teacher. Diagnosed in late 2016, Christina enters her second year of living with MS by joining the MS & Me blog team. Beyond children and education (she’s also an Honours Degree in Cultural Studies), her passions include raising awareness of multiple sclerosis. She looks forward to sharing her story as she makes her way through her degree and on to teaching. Keith Byrne Married and a new father, you may have read Keith Byrne’s story in this week’s Independent. Diagnosed just after his first Christmas engaged to his now wife, Keith has changed his life habits (exercise, diet, and, well… being a new father changes things quite a bit, too!). Keith enjoys writing – not just about MS – so we look forward to seeing what a full-time employed, newlywed, busy new father has to share. Robert Joyce Robert Joyce has been living with a diagnosis of multiple sclerosis for over 25 years. For the past 4 of those with the addition of chronic pain. He writes the blog A 30-Minute Life about his experiences with both. In his two and a half decades living with this disease, he’s come up with some interesting strategies, a sense of gratitude and looks forward to sharing them with our community. We too look forward to sage advice and thoughtful reflection from this long-time MS veteran. Next week we’ll share profiles of our remaining MS & Me blog team. We hope you read, comment, and share your thoughts as we bring you new perspectives and new voices in the coming months.
Roche’s ocrelizumab receives licence in the EU for relapsing forms of multiple sclerosis (RMS) and primary progressive multiple sclerosis (PPMS) Ocrelizumab is first and only approved disease-modifying medicine for people in EU with early PPMS Dublin, 12 January 2018: Roche announced today that ocrelizumab has been granted marketing authorisation in Europe for patients with certain types of active relapsing forms of multiple sclerosis (RMS) and early primary progressive multiple sclerosis (PPMS). Ocrelizumab is the first and only approved disease-modifying medicine for people in the European Union (EU) with early PPMS. Multiple sclerosis (MS) affects approximately 700,000 people in Europe, of which around 96,000 have the highly disabling primary progressive form.1,2 Most people with MS have a relapsing form (RMS) or primary progressive MS (PPMS) at diagnosis.3 “An estimated 1,350 people in Ireland live with PPMS. Today’s licence of ocrelizumab signifies an important treatment option for their disease,’’ said Dr Michal Starnawski, Roche’s Medical Director in Ireland. “Ocrelizumab is the first medicine to be approved for primary progressive MS, a debilitating form in which patients can quickly start to experience disability that is irreversible. Now that we have the licence, we can move forward to the next stage of ensuring access for patients. We are committed to working with the HSE to provide this access as quickly as possible.’’ Speaking about the new licence, Professor Chris McGuigan, Consultant Neurologist at St. Vincent's Hospital in Dublin said “The granting of an EU licence for ocrelizumab is very positive news. Currently, there are no other licensed drugs for this type of MS and people with the condition experience a progression in symptoms which can cause mobility issues making work and daily activities challenging.” The most common side effects associated with Ocrelizumab in all Phase III clinical trials were infusion reactions and upper respiratory tract infections, which were mostly mild to moderate in severity. About Ocrelizumab Ocrelizumab is a humanised monoclonal antibody designed to target CD20-positive B cells, a specific type of immune cell thought to be a key contributor to myelin (nerve cell insulation and support) and axonal (nerve cell) damage. This nerve cell damage can lead to disability in people with multiple sclerosis (MS). Based on preclinical studies, Ocrelizumab binds to CD20 cell surface proteins expressed on certain B cells, but not on stem cells or plasma cells, and therefore important functions of the immune system may be preserved. Ocrelizumab is administered by intravenous infusion every six months. The initial dose is given as two 300 mg infusions given two weeks apart. Subsequent doses are given as single 600 mg infusions.
With the turn of the New Year MS & Me is expanding and diversifying. In this post, we also say ‘goodbye’ to a number of friends Late in 2013, the MS & Me blog launched with an idea, a hope and a cadre of nine bloggers with what we jokingly referred to as “varying levels of inexperience”. The idea was to create a space where real conversations about MS would be led by people with the disease. The ambition for MS Ireland was that we, the bloggers, would strike a chord and stir conversation in our national and international community. We know these past four years have been a great success for the MS & Me community and we’re excited to announce the expansion of our team in the coming posts. First, however, it wouldn’t be right to let the departure of a few of our original bloggers pass unmentioned. The volunteer endeavor to make this a safe and interesting place, where people can read of the experiences of others and share their own, has been a monumental commitment of time, energy and emotion. Some of our original team have taken the opportunity of the expansion of our blogging team to recommit to other aspects of their lives. Goodbye and Good Luck First, we’re ‘kicking Emma upstairs’, as it were. As well as blogging with us, she’s been a part of the editorial team of MS & Me since before we published our first post. We have restructured our editorial side for 2018 and, with a vastly expanded roster of bloggers, Emma will have more time to focus on editing and communication aspects of the blogs. We may hear from her every now and again, but, for the most part, Emma will be helping our new bloggers express their voices in the coming months. Trevis will also be stepping back a bit from actively blogging. He’ll be concentrating on a new series of group blogs we’ve planned for the coming year, so you’ll still see some of his writings, but in a slightly different way. Both Aoife and Lucina will, sadly, be leaving our team as well. Aoife has always given us a youthful vibe and positive outlook in her writing. From personal tales of difficulties to representing us all in Leinster House, we have enjoyed and been inspired by Aoife. She is now currently working for MS Ireland and is also very involved with Shift.MS. We can’t wait to see what how she continues to use her voice for all people living with multiple sclerosis. Lucina has been busy with more than the MS & Me blog in the past four years. She’s been producing films, raising her twins, writing her personal musings in both her blog Poppy Cottage Diaries as well as the occasional piece in the national papers. She’s been an inspiration to us all. We’ll miss her wit, her smile and her pragmatism. We wish Aoife and Lucina continued success and good health as we part this company, but we also know that they’ll never be far from our hearts in this little community of people with MS in Ireland. In our coming posts we’ll introduce you to our new bloggers and catch you up on what’s been going on with our original team members who are sticking around for another year. 2018 is having a blustery start on the weather front but for the MS & Me blog the forecast is it’s going to be a *HOT* New Year!
Calling all cyclists Looking for a new challenge in 2018? We are currently recruiting cyclists to join Team MS Ireland for the Paris2Nice Cycle in September. The first Paris2Nice cycle information evening where you can find out about all aspects of the cycle and how you can fundraise for your chosen charity will take place on Thursday, January 18th in the Hampton Hotel, Dublin 4 at 8pm. Register your interest on the Paris2Nice Facebook page Get in touch If you can't make the event on January 18th but would like more information please contact Melanie: Call (01) 6781600 or email firstname.lastname@example.org
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