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: firstname.lastname@example.org
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: email@example.com
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.
This week we have a guest blogger, Michelle Henley from Cork. She has kindly shared her story with us. We’re calling it 'Love, Family and Grand Plans'. Share your comments and the story with others. This time two years ago life was great, I had returned to education. I had my life together and had begun training as a hairdresser, had two beautiful kids and a beautiful home for my little family. Okay, so being a single mother was never in the Grand Plan, but we were happy. Life was great. How things can change in the space of a few weeks…. On the 14th of February 2015 just before my 25th birthday my whole world came crashing down around me. It was on this day that my GP said four words that changed my life forever, “Michelle, it's Multiple Sclerosis”. How did it feel to hear those words? I have no idea, I was numb. Unable to feel anything. Honestly, I had no idea what multiple sclerosis even was but I just knew it wasn’t good. Looking back now I can’t remember the day properly I was in such a haze. I remember my GP trying to explain the diagnosis to me in simple terms and try to put a positive spin on it. Sitting in my car trying to make sense of it all, crying until there were no more tears left to cry. Stumbling in home to tell my family the news I had received, watching my father’s face crumble in heartbreak, looking into my mother’s eyes as she struggled to stop herself from collapsing in devastation, watching the worry spread across my aunt's face, looking at my two-year-old son playing on the floor, oblivious to what was going on and watching my seven-year-old daughter outside playing happily with her friends. At that point I had no understanding of the diagnosis and worry set in. What about my kids? Will I be able to look after them? Will we no longer be the three musketeers? Will I be in a wheelchair? How bad is this really? All of these questions in my head and nobody to answer them. In the days that followed I tried my best to hold it together, my children were my reason to get up each morning and for them I had no choice but to continue as I always had. I would get up and get through my day, get them ready for school/childminder, go to college, come home and do the same routine as every other day. By day I tried to suppress how I felt, it was the only way I could get through. I would block it out and hoped it would go away. I was so scared of what this meant for us and how we would cope. But by night, when the kids were safely tucked up in bed, I would fall apart. A few weeks later I woke up with the whole left-hand side of my body numb/tingly as if someone had drawn a line down the middle of my body. My right side was unaffected but the left side completely dead. Panic set in and I had no idea of what to do, what was wrong with me? Is this MS? Is this numbness the start of my deterioration? I called my GP and he sent me straight to the Mercy University Hospital, I was admitted and ended up staying for a week. Again, another hazy period of time, a blur of blood tests, lumbar punctures, IV steroids, prodding and poking, eyes exams, MRI scans, x-rays, occupational therapy, physiotherapy, teams of doctors, student doctors, endless questionnaires, sympathetic looks, big words and phrases I didn’t understand. Relapse? Symptoms? Lesions? Exacerbations? Gilenya? Tecfidera? I remember feeling the most alone and scared I had ever felt in my life. I couldn’t even have visitors as the hospital was closed to outsiders. Being away from my children absolutely broke my heart, I had never been away from them for so long. I just spent a week lying there feeling empty, lonely and broken. Looking back now I have one massive positive from that week and that is the neurology team that I am under. Dr O’Toole and my MS nurse Niamh have been a tower of support when I have needed them. Dr O’Toole came to my bedside, sat with me and answered my questions as best she could. She provided me with so much vital information and introduced me to the wonderful organisation that is MS Ireland. I did start to feel a little more positive after this conversation, although perhaps that could have been more to do with the fact that she told me I could go home the following day, more than me being more understanding of the diagnosis! My mother collected me from hospital and I couldn’t get into the car quick enough to see my beautiful babies sitting in the back. One thing I will never forget is the smiles that beamed from ear to ear on both their faces when they saw me. In the days that followed I was over the moon to be home with my children and family again. The kids didn’t leave me out of their sight in case I would disappear again- I still can’t so much as have a shower in peace! They are still checking up on me but I don’t mind, I wouldn’t have it any other way. I did suffer from severe migraines and back pain for a few weeks after but slowly they started to become less regular until they stopped completely and life stated slowly to return to normal. I started to pull out the information leaflets and booklets I’d been given and set upon the task of understating and managing this disease. I started trawling through the MS Ireland website and have never looked back. All the information I needed was right there, I even got to read other people’s stories. Eventually I plucked up the courage to pick up the phone and get in touch with a woman from MS Ireland called Patricia Lucey. That was the single best phone call I have ever made. She has been a rock for me to stand on, always there to talk and, more importantly, to listen. She has made several house calls to me and has even introduced me to meditation to help me manage my anxiety. Without the support of Patricia and MS Ireland I don’t know where I would be today or what version of myself I would be. I know not everyone is as lucky as I am and do suffer a lot more than I do, I am merely trying to encourage fellow MS’ers to try grab the positive and run with it. There will be days when that seems the impossible but there is always a positive. You just have to find it…. This is not the end of her story. Michelle is going to jump out of a plane to raise money for the work of MS Ireland. To donate and read more about Michelle visit www.justgiving.com/fundraising/Michelle-Hanley3
Saturday night’s Ray D’arcy show featured an interview with person with MS Kate Tobin. MS Ireland has produced a Briefing Document and Position Paper on advanced MS, which provides information on some of the topics Kate touched on in her interview. MS Ireland’s confidential Information Line 18500 233 233 is open Monday to Friday 10am to 2pm for anyone who has been affected by the issues discussed on the programme.
Queen’s University researchers make major brain repair discovery in fight against Multiple Sclerosis Queen’s University Belfast scientists have discovered that specific cells from the immune system are key players in brain repair – a fundamental breakthrough that could revolutionise the treatment of debilitating neurological disorders such as Multiple Sclerosis (MS). The research study, led by Dr Yvonne Dombrowski and Dr Denise Fitzgerald at the Wellcome Wolfson Institute for Experimental Medicine at Queen’s University Belfast, is being hailed as a landmark study in unravelling the mysteries of how the brain repairs damage. This is crucial in the fight against MS, which affects 2.3 million people world-wide and over 4,500 people in Northern Ireland. MS is the most common neurological disease affecting young adults and is the result of damage to myelin, the protective sheath surrounding nerve fibres of the central nervous system – the brain, spinal cord and optic nerve. In MS, the immune system wrongly attacks the myelin sheath covering nerve fibres in the brain and spinal cord, which can lead to symptoms such as vision loss, pain, fatigue and paralysis. Until now, medical treatment could limit relapses but could not reverse the damage already done by the condition. The exciting aspect of this new research is that the team have uncovered beneficial effects of immune cells in myelin repair that have potential to reverse myelin damage. The study was an international collaboration including experts in Cambridge, San Francisco, Edinburgh, Maynooth and Nice. The research breakthrough, which has been published today in Nature Neuroscience, shows that a protein made by certain cells within the immune system triggers the brain’s stem cells to mature into oligodendrocytes that repair myelin. The discovery means that researchers can now use this new knowledge to develop medicines which will boost these particular cells and develop an entirely new class of treatments for the future. Speaking about the importance of the new research, Dr Dombrowski, who is the lead author of the report, explained: “At Queen’s we are taking a unique and fresh approach to uncover how the immune system drives brain repair. This knowledge is essential to designing future treatments that tackle neurological diseases, such as MS, in a new way – repairing damage rather than only reducing attacks. In the future, combining these approaches will deliver better outcomes for patients.” Senior author of the study, Dr Denise Fitzgerald from Queen’s, experienced a condition similar to MS, called Transverse Myelitis when she was 21 and had to learn to walk again. Commenting on the findings, Dr Fitzgerald said: “This pioneering research, led by our team at Queen’s, is an exciting collaboration of top scientists from different disciplines at Cambridge, San Francisco, Edinburgh and Nice. It is by bringing together these experts from immunology, neuroscience and stem cell biology that we have been able to make this landmark discovery. “This is an important step forward in understanding how the brain and spinal cord is naturally repaired and opens up new therapeutic potential for myelin regeneration in patients. We continue to work together to advance knowledge and push the boundaries of scientific knowledge for the benefits of patients and society, in a bid to change lives for the better, across the globe.” This work was supported by a number of funders including the BBSRC, Wellcome Trust and Leverhulme Trust. Media inquiries to Emma Gallagher, Communications Officer at Queen’s University on 028 9097 5384 and firstname.lastname@example.org Further reading MS Ireland conducted an interview with Dr Denise Fitzgerald about her work, which appeared in issue 2 of our research eZine MS Research. Download the eZine and read the interview
MS Ireland launches new publications ‘Time to Act’ and ‘MS Treatment Decisions’ MS Ireland is delighted to launch two major new publications, ‘Time to Act – A consensus on early treatment’ and ‘MS Treatment Decisions’ in Brain Awareness Week 2017. Time to Act - A consensus on early treatment is a consensus statement on early diagnosis and treatment in MS. Based on a paper published by the UK MS Society in September 2015, this document outlines and reviews the latest research evidence regarding the importance of starting treatment with a disease modifying therapy (DMT) as soon as possible after diagnosis. In adapting this paper for the Irish context, MS Ireland consulted with a group of Irish neurologists with a specialist interest in MS. Time to Act contains detailed recommendations for policy makers and clinicians, and MS Ireland envisages that this will be a valuable tool in helping us to advocate for greater investment in neurology services in Ireland and better access to treatment and care for people with MS. MS Treatment Decisions - is for people with MS or suspected MS. It aims to empower and equip people with MS or suspected MS to: Understand the importance of early diagnosis and early treatment (if appropriate) Explain to healthcare professionals what is most important to them and what their treatment goals are Ask questions until they feel they have all the information they need to make informed decisions regarding their treatment and care Understand the importance of regular MRI scanning to monitor disease activity, and be able to discuss scan results and their implications with healthcare professionals Be able to monitor their MS by keeping records of symptoms and other factors that impact on health and wellbeing, such as side effects from treatments Be confident when engaging in discussions with healthcare professionals about treatment options, so the decision-making can be shared MS Treatment Decisions was developed in consultation with neurologists, MS nurses and people with MS. Information was also taken from ‘Brain Health: A Guide for People with Multiple Sclerosis’, published by Oxford PhramaGenesis. In addition to the people with MS and the clinicians acknowledged in the documents, MS Ireland would also like to thank Mags Rogers from the Neurological Alliance of Ireland for her assistance and Sanofi Genzyme who supported the development of the publications with an unrestricted grant. (Left to right) Harriet Doig, Information, Advocacy and Research Officer from MS Ireland, Professor Tim Lynch, one of the four neurologists who participated in MS Ireland’s Advisory Board, and Fred Doherty, Sanofi Genzyme. Further reading: MS Ireland has developed a guide to the National Clinical Programme for Neurology Model of Care, which was launched in September 2016 and is referenced throughout Time to Act. This guide presents a summary of the Model of Care document, with particular reference to how it relates to people with MS. This can be downloaded here MS Ireland’s ‘Societal Costs of Multiple Sclerosis in Ireland 2015’ report can be downloaded here Get in touch: For further information and questions regarding these documents, or to obtain hard copies, please email Harriet Doig, Information, Advocacy and Research Officer at email@example.com
This week Declan Groeger shares his MS 'Fears' My MS fears have changed over time and yet they have stayed the same. You see I never really worried about what MS would do to me but how it would affect my family. My first fear, post diagnosis, concerned my ability to continue working; the ability to provide for my family and continue in the hunter/gatherer role. Would my MS progress rapidly, rob me of my independence, confine me to a wheelchair and make me a burden on my family. I was 31 years old with two small children and I just didn’t know the answers and I was worried. I worried whether either of my two children would have MS; that fear is still with me. As you know more women are diagnosed with MS and I have two daughters. There is a hereditary factor with MS and I have a maternal uncle who lives with MS; the odds were stacking against my two girls. I have twenty nieces and nephews and many of them have children of their own and I have a grandson. I sometimes wonder whether any of them will have MS. Would I be able to continue with my fair share of household duties or would Jean have to carry a disproportionate load, whilst maintaining her nursing career? We found our level and Jean never complained but I did feel ‘guilty’ for not doing enough. Jean’s proportion has grown steadily over the years as mine has decreased but this is no longer a cause of worry; it is reality. I had a number of other concerns but most of those only became relevant as an event approached; Birthday Parties, First Communions, Confirmations, Graduations, Holidays. Would I be an active participant or merely an observer? I did play an active part in all of these events. As my MS progressed and my precious girls matured into young women I worried if I would I be able to walk them up the aisle if they decided to marry? The girls did decide to marry and with a combination of grit, determination, pure stubbornness and a massive amount of positivity from the wedding guests I managed to fulfil my role as ‘Father of the Bride’ and walked up the aisle with both girls. When I heard that I was to become a grandad I worried whether I would be able to play with our grandson Jack? Would I be able to hold and cuddle him? The good news is that this fear/worry was very short lived and Jack will be loved as much, if not more, than any grandson in history. Our playtime together will be different but every bit as enjoyable. Multiple Sclerosis (MS) is different for each and every one of us and my one piece of advice to anyone diagnosed with MS would be not to be consumed by fear and worry. A diagnosis with MS is life-changing not life ending (although it may feel like that at the time). Don't forget to check out able2access.wordpress.com
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