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
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 here , 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.
Short Story Evening to mark World MS Day Greystones Scribbles - now in its tenth year, would like to invite you to an evening of original short stories at the Glenview Hotel on Thursday, May 30th for a 7.30 pm start until 9.00 pm. Admission is just €7 to include a complimentary glass of wine/soft drink. All proceeds to MS Ireland's East Wicklow Branch. Get in touch Text Mark Mitchell at 087 2453 193.
Local Authority and European Parliament Elections With Local Authority and European Parliament Elections around the corner, now is the time to raise local issues with candidates seeking your vote. MS Ireland are members of the Disability Federation of Ireland (DFI) and the Neurological Alliance of Ireland (NAI). We are supporting their campaigns to make disability and neurology top priorities for candidates in both the Local Authority and European Parliament Elections. We are asking you to get involved too! Local Authority Elections Accessibility Are there accessibility issues in your area? Are there uneven pathways? Are there pedestrian lights that don’t give you adequate time to cross the road? Think about the accessibility issues you face locally. Ask your local authority candidates to commit to ensuring local public services and buildings are accessible for people who live with a disability. Participation Are you aware if people living with disabilities are involved with current decision-making structures locally? Can your local candidate tell you about Public Participation Networks? Ask your candidate to commit to ensure that people living with disabilities are encouraged to take part in local decision making. Planning Is your local candidate aware of the United Nations Convention on the Rights of People with Disabilities (UNCRPD)? Do they know what changes need to be made locally to comply with this convention? Ask your candidate to commit to ensuring that your local authority publishes its implementation plan for the UNCRPD by 2020. Don’t forget to mention the MS Care Centre Business Case In addition to having the power to influence local change, candidates for local authority often have the capacity to raise issues with TD’s and Senators. If a candidate asks for your vote, please make them aware of the MS Ireland Care Centre Business Case and ask them to raise the issue with Elected Local Representatives. The Care Centre Business Case can be downloaded here European Elections European Parliament hopefuls are being asked to pledge support in a number of key areas; Accessibility & Equality Ask European Parliament candidates to commit to making products, services and infrastructure accessible to people with disabilities and to stop discrimination. Ask European Parliament candidates to commit to working at and EU level to ensure equitable access to treatments, services and supports for people with neurological conditions. Investment Ask European Parliament candidates to support the investment of European funds in persons with disabilities. Support Ask European Parliament candidates to support the aims and objectives of the Members of European Parliament (MEP) interest group on Brain, Mind and Pain. Ask your European Parliament candidate to work at EU level to increase awareness of neurological conditions as a major public health and social care issue. Ask candidates to commit to their support on Twitter using #DisabilityVotesCount and #LoveYourBrain2019 Further information: www.disability-federation.ie www.nai.ie
NUI Galway are recruiting Applications are invited from suitably qualified candidates for a part-time, fixed term position (20% FTE) as a Patient Representative Research Assistant with the Discipline of Occupational Therapy at the National University of Ireland, Galway. This position is funded by Health Research Board and is available from July 1st 2019. This is a specific purpose contract circa 30 months. Information on project: The post is an exciting opportunity to be part of a research study of a cognitive rehabilitation intervention for people living with multiple sclerosis. Some people with multiple sclerosis have cognitive symptoms (e.g. difficulty with memory, processing information, attention) that impact their daily lives. The lead researcher has developed a new occupational therapy programme for people with multiple sclerosis that aims to help people deal with these symptoms. The programme will be assessed in this study. How to apply: Applications to include a covering letter, CV, and the contact details of two referees should be sent, via e-mail (in word or PDF only) to Dr Sinéad Hynes at firstname.lastname@example.org Please put reference number NUIG-079-19 in subject line of e-mail application.Or by post to Dr Sinéad Hynes, Lecturer in Occupational Therapy, School of Health Sciences, Áras Moyola, NUI Galway. Closing date for receipt of applications: Friday 31st May 2019 at 5.00 pm Interviews are planned to be held on 11th June 2019 All positions are recruited in line with Open, Transparent, Merit (OTM) and Competency based recruitment. National University of Ireland, Galway is an equal opportunities employer.
This week Mary Devereux talks about falling and how she is dealing with the impact of Primary Progressive MS on her life and the lives of her family members. I have fallen… I could fall up a stairs, down a stairs; going up a footpath and going down a footpath and often I have tripped on...nothing. My foot sticks to the ground, my ankle or knee will simply stop working and I fall. Sometimes I will jump awake from a sleep with the sensation of falling. Falls are part and parcel for many people with Multiple Sclerosis. Falls are something we endure but also work hard to prevent. Muscle weakness, spasms, coordination problems, foot drop and numbness are all common MS symptoms that increase our risk of falling. More often than not, falls are unpreventable. I used to have SO many more suit jackets but no trousers to match because they were the casualty of my many falls. The first reaction I have when I fall is one of embarrassment; the second is to get up as quick as I can and walk as fast as I can, not looking right nor left and hoping no one has seen me. These are my first reactions despite any pain I may be in. Some of my falls are my own fault, like when I am over-tired but still insist on carrying out a task instead of listening to my body. Then foot-drop hits and all of a sudden I am having a close encounter with the floor. Or if I am carrying too many things at once instead of slowing down and carrying out the task in a safer and more thoughtful manner (that’s a whole different conversation for another day!). When your tendency to fall is no longer funny to people, you see the worry on their faces. That worry often leads to attempts to protect you. It begins with “don’t climb that ladder” or “don’t go up to the attic”, then “don’t stand on the chair”... all things I would have done before diagnosis without batting an eyelid. Once I fell down the stairs, couldn't stop myself and heard the crunching of bones as I tumbled. The things I have been running away from I now have no choice but to allow them to be part of my life. They minimise the risk of falling and therefore the injuries I might get from falling. Things like a cane, a rollator, the bed rail, the non-slip mat on the bedroom floor, the second banister rail, the shower chair... the list goes on. I learned early on with this disease I had to help myself in order to survive; if my wellbeing and survival comes by way of special equipment, so be it. My latest addition to falling has been in the middle of the night. Sometimes I wake up from pain, try to sit at the side of the bed fully expecting my feet to be my anchor and all of a sudden my feet are sliding out in front of me. I know I’m going to hit the ground and there isn’t a thing I can do to stop it. I scream, wake the house and have to accept the help to get up. Then I spend all the time apologizing for it. What do I fear most about falling? The look of fear on my loved ones’ faces. The slow ebbing away of my confidence and independence. This progressive disease is a thief that comes any time of day or night and never leaves empty handed. The MS thief always takes a little bit of me with it.
Kiss Goodbye to MS on World MS Day Join us this World MS day (30th May) for our 9000 steps challenge to help support the 9000+ people living with Multiple Sclerosis throughout Ireland. It’s easy to join, wherever you live, whatever your fitness level, you can decide when and where you will complete your steps. You can choose to walk, run, dance, swim or even hop to complete your challenge. You can do it by yourself, with friends or family or get together a team with your work colleagues. Every step you take will represent your support for the 9,000 people living with MS in Ireland. Together we can take a step closer to providing more services and finding better treatments, and eventually a cure for MS. Help us make MS history! #KissGoodbyeToMS Get in touch Sign up online today or for more information email email@example.com
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