MS Ireland has formally committed to complying with the Statement of Guiding Principles for Fundraising
MS Ireland is fully committed to achieving the standards contained
within the Statement of Guiding Principles for Fundraising.
• Improve fundraising practice
• Promote high levels of accountability and transparency by organisations fundraising from the public
• Provide clarity and assurances to donors and prospective donors about the organisations they support.
The Board of MS Ireland have considered the Statement and believe we meet the standards it sets out. Where we have not complied with the Statement we have provided an explanation.
MS Ireland's report on our fundraising activities is available in our most recent Annual Report 2015
We welcome your feedback on our performance via any of the contact points provided. Read our Feedback and Complaints Procedure.
The Statement of Guiding Principles for Fundraising is a guide to best practice developed by a steering group set up in response to the Charities Act 2009.
The Board of MS Ireland endorse the following "Donor Charter"
• As a charity seeking donations from the public, we, the Multiple Sclerosis Society of Ireland, (MS Ireland) aim to comply with the Statement of Guiding Principles for Fundraising.
• Our pledge is to treat all our donors with respect, honesty and openness.
• We commit to being accountable and transparent so that donors and prospective donors can have full confidence in MS Ireland.
• We promise we will effectively apply your gifts to use for their intended purposes.
• We commit that you, our donors and prospective donors will:
• Be informed of the organisation’s mission, and of the way the organisation intends to use donated resources.
• Be informed of the identity of those serving on the organisation’s governing board, and that the board will exercise prudent judgement in its stewardship responsibilities.
• Have access to the organisation’s most recent financial statements.
• Be assured your gifts will be used for the purposes for which they were given.
• Receive appropriate acknowledgement and recognition.
• Be assured that information about your donation is handled with respect and with confidentiality to the extent provided by law.
• Expect that all relationships with individuals representing the charity will be dealt with professionally.
• Be informed whether those seeking donations are volunteers, employees of the organisation or hired third party agents.
• Have easily available the agreed procedures for making and responding to complaints.
• Have the opportunity for any names to be deleted from mailing lists. MS Ireland mailing lists are not shared with third parties.
• Receive prompt, truthful and forthright answers to questions you might have of the organisation.
If you do have a comment about any aspect of our work, you can contact MS Ireland in writing, by telephone or email. In the first instance, your comment will be dealt with by our CEO. Please give us as much information as possible and let us know how you would like us to respond, providing relevant contact details.
Write to: Chief Executive, MS Ireland, 80 Northumberland Road, Dublin 4 Tel: 01 6781600 Email: email@example.com
The Statement of Guiding Principles for Fundraising sets out the following in relation to Disclosure:
“Donors have the right to be informed of the status and authority of those soliciting donations; for example, donors will be informed if fundraisers are employees of the organisation or third party agents”.
MS Ireland is open about whether those seeking donations on its behalf are volunteers, employees of the organisation or are third party agents. Anyone fundraising on behalf of MS Ireland must ensure that prospective donors are aware of their status, i.e. volunteers, employees or third party agents.
If or when a member of the public enquires about the employment standing of a fundraiser they must receive an honest and open answer. The standing in this case relates to whether or not a fundraiser is a volunteer, a paid employee of the charitable organisation or a third party agent working on behalf of the charity.
As a valued supporter of MS Ireland, the board know it is important that we facilitate any feedback or complaints that you may have. If for any reason, you should feel aggrieved then we will endeavour to do our utmost to make sure that we come to a satisfactory resolution. We feel it is important that we learn from our mistakes so your feedback is very important to us.
We are committed to ensuring that all our communications and dealings with the general public and supporters are of the highest possible standard. We listen and respond to your views so that we can continue to improve. We are committed to upholding the Statement of Guiding Principles for Fundraising available on www.ictr.ie We welcome all feedback.
Therefore we aim to ensure that:
• it is as easy as possible to make a complaint;
• we treat as a complaint any clear expression of dissatisfaction with our operations which calls for a response;
• we treat it seriously whether it is made by telephone, letter, fax, email or in person;
• we deal with it quickly and politely;
• we respond accordingly - for example, with an explanation, or an apology where we have got things wrong, and information on any action taken etc;
• we learn from complaints, use them to improve, and monitor them at our Board.
If you have feedback or a complaint about any of our work you can contact our Chief Executive by email, telephone or in writing:
Ava Battles, Chief Executive, MS Ireland, 80 Northumberland Road, Dublin 4; Tel: 01 6781600; Email: firstname.lastname@example.org
If your complaint is received over the phone we will endeavour to have it resolved there and then (where possible), if it is received by email, fax or post we will acknowledge it within 7 days and do everything to resolve any complaints within 14 working days. If this is not possible, we will explain why and provide a new deadline.
If you are not happy with our response, you may get in touch again by writing to MS Ireland’s Chairman. The Chairman will ensure that your appeal is considered at Board level and will respond within two weeks of this consideration by Board members.
Finally, if you feel that you are not satisfied, we can direct you to an independent monitoring group who will assess your complaint in an objective manner.
In the lead up to World MS Day 2017, MS & Me blogger, Trevis L Gleason gets behind this year’s theme Life with MS It could be said that I often quip about my multiple sclerosis as a coping mechanism. “Sure,” I’m oft heard saying when someone bemoans my disease more than I do, “We’ve all got something and there ain’t none of us getting out of here alive!” Is a favorite, as well as, “Better bad breath than no breath.” I’ve learned to take the things that MS (and life) hands me in the stride of existence. This isn’t always easy, particularly when my ‘stride’ is an MS gait which looks like I’m the monster from a bad Frankenstein remake or a hobbled gunslinger from the KO’d corral. Perhaps I can keep up this pithy attitude for the sake of appearances, or more likely, I must in defense of my own sanity. Forsooth, “If I didn’t laugh, I’d cry… and I’ve cried enough about MS” has got to be the truest of my ironies. My life with MS – as much as I can possibly make it – is about the living party. I get sad, have had bouts with MS-related depression and am sometimes even angry about what I can no longer do, just like anyone else who has heard the words, “You have multiple sclerosis”. But until they hang a tag on my toes, I’m going to drag them in the sand, dip them in the tide and dirty them in the garden. Which brings me to a raspberry seed that’s been stuck in my wisdom tooth since I first moved to Ireland nearly 5 years ago. I am not a ‘sufferer’! In press articles and reports, in biographical paragraphs and introductions, in speeches and interviews, I hear us being referred to as ‘MS sufferers’. I find that term archaic at best, arcane in all likelihood and offensive for certain. While I will not deny that I experience and am subject to symptoms of my disease and I am affected by, and become worse (all part of definition #1 of suffer from the Oxford English Dictionary), I am not a sufferer. I also struggle to surmount the definition of contend with MS but no one thinks to call me an MS contender. I deal effectively, cope, but the media doesn’t think to call me a coper. We remain, we are faced with and experience my symptoms but you won’t see enduror, undergoer or encounteror in print. Why then am I a sufferer?? Absurd, of course, are these awful monikers for someone who lives with a disease. And don’t get me wrong, I’m not expecting to be called a liver either! I’d simply like to be a person, like you, like your family, like the rest of our community and the world. I am a person…. Yes, I’m a person who lives with MS, but I’m a person first, last and foremost. Why doesn’t the media stop using ‘sufferer’? Because we’ve let them get away with it. This year’s World MS Day is titled ‘Life with MS’. LIFE with MS. A successful Life with MS is all about the living part. I call on all of us living with MS to stop people when they call us sufferers. From here on, when I see it in a paper, hear it on a radio program or see it on television, I will call, write or e-mail the offending media outlet and correct them. It is time we are seen for more than our disease. We are contributors to society, we make the world a better place for ourselves and our community, we get up in the morning and do the best we can with what we have for as long as we can. We LIVE our lives with MS and we are people first. Happy World MS Day 2017. May we all LIVE our Life with MS. #LifewithMS Wishing you and your family the best of health. Cheers Trevis Trevis’ Award-Winning book, Chef Interrupted, is in the shops now. Follow him via Life With MS Facebook page, on Twitter and don’t forget to check out TrevisLGleason.com
Pregnancy contraindication removed from Copaxone 40mg/ml 3-times weekly, the first drug in this category to be cleared; Positive report agreed at European level, approval granted by Irish regulator Approximately 9,000 people in Ireland have multiple sclerosis, an autoimmune disease of the nervous system that disproportionately affects women of childbearing age Irish doctors can now prescribe a treatment option for women with relapsing forms of multiple sclerosis (MS) who are seeking to start a family. Teva Pharmaceuticals Ireland has announced that the pregnancy contraindication for the Glatiramer Acetate injection, Copaxone 40mg/ml 3-times weekly, has been removed from the European label. An equivalent change was approved for Copaxone 20mg/ml in December 2016. No other drug in this category has had the pregnancy contraindication removed. MS is an autoimmune disease of the nervous system which damages the insulating covers of nerve cells in the brain and spinal cord, affecting vision, muscle control and other bodily functions. Approximately 9,000 people in Ireland live with the disease, and roughly 250 new cases are diagnosed each year. MS disproportionately affects women of childbearing age (20-40 years old). The removal of the pregnancy contraindication follows a Positive Variation Assessment Report issued by the UK's Medicines and Healthcare Products Regulatory Agency (MHRA), and agreed by all Concerned Member States (CMS) in Europe that were involved in the procedure. Ireland’s medicines regulator, the Health Products Regulatory Association (HPRA), has also granted approval. The approval was granted based on an analysis of prospective pregnancy cases with known outcome and confirmed exposure to Copaxone 20mg/ml, from Teva’s Glatiramer Acetate (GA) Pharmacovigilance Database. This further strengthens the conclusion of the robust analysis of Copaxone 20 mg/ml pregnancy data, based on more than 2,000 pregnancy cases1. To date, this is the largest analysed dataset of pregnant women with MS who were exposed to disease modifying therapies during pregnancy. Dr Greg Hays, Medical Director, Teva Pharmaceuticals Ireland, said the contraindication removal is significant for women with MS seeking to start a family. “MS is a debilitating disease that disproportionately affects young women at an age when they are most likely to be considering starting a family. “Teva is committed to helping women with relapsing forms of the disease lead the complete lives they desire. While it is still preferable to avoid using MS treatments during pregnancy, in appropriate situations, the removal of the contraindication from Copaxone is welcome for those who wish to remain on their medication or who were previously advised to stop taking their medication for the duration of the pregnancy.” Ms. Ava Battles- Chief Executive Officer at the Multiple Sclerosis Society of Ireland-said: “As MS is more prevalent in women of childbearing age than in any other group, the removal of the contraindication from Copaxone allows for Irish doctors to prescribe a treatment option (in appropriate situations) for women with relapsing forms of multiple sclerosis (MS) who are seeking to start a family.”
This week Declan Groeger is not a ‘Muscle Mary‘ but believes exercise has helped him maintain a positive attitude and helped to preserve his mental health. I am passionate about exercise now but that wasn’t always the case. I am a convert and an advocate for the cause. I am not going to use this blog to tell you why you should exercise but believe me when I tell you that you should. I am going to tell you about ‘Exercise, Multiple Sclerosis & Me’. There was a time when exercise was contra-indicated for People with Multiple Sclerosis (PwMS) and that is my excuse for not exercising for so many years after my diagnosis; probably closer to the truth was the fact that I was a bit on the lazy side. The attitude to exercise has changed over the past number of years and these days exercise is actively encouraged in its many different forms. I was never sporty except as a spectator. I never carried any extra weight. I didn’t smoke at the time of diagnosis. I drank in moderation and ate relatively healthily. I was never motivated to exercise but in any event I never realised how important exercise, or the lack thereof, was going to be in later life. I had a young family; keeping up with two small children, household chores, gardening and a job were enough exercise, or so I thought. I exercise regularly now and have done so for more than 11 years. I go to the pool or the gym 2 or 3 times a week and I also have a list of daily home exercises. I don’t want to be a ‘Muscle Mary’ and I definitely won’t be blamed for overworking any of the gym machines! I go to the gym early in the morning when I am at my best; my energy levels start to wane in the afternoon. I love the social interactions in the gym and I feel that I am doing something positive to stem the MS tide. Even though I always feel tired after a gym session it is a good tired and the feel good factor is great. I believe that exercise has also helped me maintain my positive attitude and has helped to preserve my mental health. I’m sorry I didn’t start exercising earlier but because no one knows the course of the disease or the speed of progression, it is impossible to say whether my efforts would have been any more successful. I believe that exercise is helping me in my battle with MS and belief is a powerful motivator. I know that I should have started earlier but I also believe that it is never too late to start. Exercise is good for you whether you are living with MS or not, but don’t overdo it. A Chinese proverb says ‘the best time to plant a tree was 20 years ago. The second best time is now’ and the same can be said for exercise – it is never too late to start. Looking forward to your comments... Declan Don't forget to check out able2access.wordpress.com
Highlighting Life with Multiple Sclerosis World MS Day 2017 will take place on Wednesday, May 31st and the theme this year is 'Life with MS', raising awareness of Multiple Sclerosis for thousands of people in Ireland and their families. Aoife Kirwan from Kildare and Maggs O’Riordan Wall from Limerick, both living with MS, are highlighting the challenges of life with MS including MS attacks, mobility issues, cognitive difficulties and the crucial need for increased neuro rehabilitation services. Ava Battles, Chief Executive, MS Ireland comments: “Life with Multiple Sclerosis is greatly impacted by the availability of neurology and neurorehabilitation services and this World MS Day we are calling for an increase in resources for neurology services in Ireland that match the need, ensuring access to care and support on time. Early identification of MS, early treatment with an appropiate medication and timely neurorehabilitation can improve functioning, reduce symptoms, and delay or prevent disability accumulation or deterioration.” How to get involved Events are planned across Ireland to mark World MS Day 2017 including 9,000 Steps for MS which will see supporters running, walking or dancing 9,000 Steps (6.5k) with colleagues, friends or family. Funds raised will directly help in services provision locally, in particular, physiotherapy, counselling and respite at the national MS Care Centre. Share your tips and photos/videos with us on Facebook, Twitter or Instagram for living well with MS. Don’t forget to use the hashtag #LifewithMS MS Ireland, the national organisation providing vital services, information and support to people with MS, will hold a World MS Day event at Leinster House on Wednesday, May 31st to raise awareness of essential neuro rehabilitation services for people with Multiple Sclerosis. Neurology services in Ireland: The number of specialist nurses is significantly below what is recommended for our population with less than half the recommended number of MS nurses Every hospital group exceeds the ratio for consultant neurologists for our population No centre has MRI access for routine referrals in under two months and seven of the eleven neurology centres cannot get access within one year of referral. Lack of access to neurorehabilitation services including therapies such as physiotherapy, occupational therapy and speech and language therapy. Ireland should have nine community neurorehabilition teams. There are currently only three in the entire counry and these are only partially staffed * The source of these statistics is the survey carried out by the Neurological Alliance of Alliance and the National Clinical Programme for Neurology, published in February 2016.
The Effect of Gender Identity on Help-Seeking and Social Support in Male Carers of People with MS Researcher Damien Appleton, Clinical Neuropsychologist from the University of Leicester is asking male carers of people with multiple sclerosis (MS) to complete a series of online questionnaires investigating levels of social support, carer burden, willingness to seek help and attributes related to gender role. Who can take part? Any male over the age of 18 who is a carer of a loved one with multiple sclerosis. Should you wish to do so, you can choose to provide your contact details in the form of an email address to be entered into a draw to win one of four £50 Amazon vouchers. What will I have to do? If you decide to complete this survey, you will be required to complete it in one sitting, which means you cannot save your responses half way through and come back to it later to complete. It should take approximately 30 minutes to complete and your time is greatly appreciated. What will be done with my responses? Your responses will be anonymous and no identifiable information will be included in any reports that are produced with the results of this survey. The responses will be stored securely on a computer that only the research team has access to and all data will be destroyed after 7 years. Should you wish to withdraw at any time, you have every right to do so and you should contact the researchers to request this. Consent: By choosing to complete this survey and submit your results, you are agreeing to the terms above and consenting to your anonymous data to be used in a research report. You are also confirming that you are a male carer of a loved one with MS. Who has reviewed this study? The University of Leicester Research Ethics Committee. If completing this survey causes you any emotional distress, please contact your GP to talk through support options that may be available to you. We thank you again for your time taken to complete this survey. Should you wish to complete the questionnaires in written form, please contact the researchers and this can be arranged. Get in touch Contact Damien Appleton by email email@example.com
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