Date/Time: 06 January 2018 - 09:00 to 17:00
Organiser: MS Ireland
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Date/Time: 08 January 2018 - 11:00 to 12:00
Organiser: South East: Una Goan, Community Worker
Region: South East
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 email@example.com
More than 9,000 people are living with Multiple Sclerosis in Ireland. Multiple Sclerosis (MS), meaning ‘many scars’, is the most common disabling neurological disease affecting young adults in Ireland. MS impacts the motor, sensory and cognitive functioning of the body and is usually diagnosed between 20 and 40 years of age. MS is a progressive, neurological condition of the brain and spinal cord (central nervous system). MS symptoms or attacks include impaired mobility and vision, severe fatigue and cognitive difficulties. There is no known cause or cure for the condition. Approximately three times as many women than men are diagnosed with MS. Types of MS Relapsing – Remitting: This is the most common type of MS. It is characterized by attacks (relapses) and remissions (recovery). During remissions a person would have fewer or no symptoms. Relapses tend to be unpredictable and their causes are unclear. During a relapse new symptoms may occur or previous symptoms may return. A relapse is usually defined as the appearance of new symptoms lasting more than 48 hours. They can last any length of time. In 85% of people with MS, it starts with a relapsing-remitting phase. Primary Progressive: Some people with MS never have distinct relapses and remissions. From the start they experience steadily worsening symptoms and progressive disability. This may level off at any time, or may continue to get worse. Some 15% of people with MS have the primary progressive form of the disease, also known as chronic progressive. Secondary Progressive: This type starts in the same way as relapsing-remitting MS but after repeated attacks the remissions stop and the MS moves into what is known as a progressive phase. Around 40% of people develop secondary progressive MS. The time it takes to move into the secondary progressive phase varies. It usually happens within 15 to 20 years of the first onset of MS. Living with MS Please visit the MS & Me Blog MS Ireland is the national organisation providing services, information and advocacy to support people with MS. Ava Battles is Chief Executive of MS Ireland: “Multiple Sclerosis is a hugely challenging progressive neurological condition. The nature of MS relapses or attacks makes it very difficult to manage for people living with MS. MS Ireland is proud to support people in this community in helping to maintain independence and quality of life for example through seminars for those newly diagnosed, support for families living with MS, the provision of services including physiotherapy and counselling, the MS Information Line and respite care.” For more information on Multiple Sclerosis (MS) and MS Ireland, visit our website on www.ms-society.ie, call our information line on 1850 233 233 or email firstname.lastname@example.org.
'Quiet Time' The Western Regional Office are delighted to tell you that our very popular Soulfeast will take place again in the sumptuous and tranquil setting of the Shearwater Hotel in Ballinasloe on the weekend of 16th to 18th February 2018. The theme for the weekend will be “Quiet Time” and we hope it will bring you some rest, respite and relaxation The cost of the weekend including 2 nights’ bed and breakfast, 2 lunches & 1 gala dinner is €150.00 per person sharing. If you are interested in attending please return the booking form on or before Friday, 2nd February 2018 along with a deposit of €50 to secure your place Get in touch For further information please contact us here at the Western Regional Office on 091 768630 or email email@example.com
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