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 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: 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.
Issue 4 is out now! MS Research is a bi-annual research eZine. In each edition we will be sharing the latest updates from scientific and social MS research, from here in Ireland and internationally. In this issue Research prioritisation survey results Research event reports Causes of MS Biotin Physiotherapy Psychology Stem cells Myelin repair ECTRIMS And so much more…. Get in touch Contact Harriet Doig, Information, Advocacy and Research Officer: email email@example.com or call (01) 6781600
New international research published into treatment expectations of people with MS New international research finds that people living with MS prioritise slowing disease progression when considering treatment choices. People with MS want therapies that reduce the number of relapses they suffer and to achieve better control of symptoms like fatigue and pain. The TaP-MS survey, published on 8th December, gathered over 1,000 responses from people with MS in countries ranging from the US, Canada and Australia to Sweden, Germany, France and the UK. It found that as well as seeking to stop disease progression people with MS want more vitality and energy. A new University College London School of Pharmacy report (Greater Expectations: the Future Hopes of People with Multiple Sclerosis, also published last week) highlights the value of early diagnosis and universal access to medicines that people with MS and their doctors judge are most likely to benefit them. It stresses the need for personalised combinations of medical, pharmaceutical, nursing, psychological, social and economic support for people with MS and calls for regular auditing of care delivery standards. Greater Expectations argues that current economic evaluation methods can under-estimate the true value of better MS treatments. Fears about the affordability of high quality health and social care can also be exaggerated. The UCL School of Pharmacy report in addition points to the potential for MS prevention programmes aimed at reducing vitamin D deficiency related risks and cutting smoking and obesity rates amongst teenagers. However, providing disease modifying treatments and investing in ongoing biomedical research are central to further reducing MS related harm. Greater Expectations’ recommendations include: Governments throughout Europe should publicly commit to providing everyone with MS with the treatments that they, their neurologists and other professional advisers judge will offer them maximum benefit; There ought to be open access to reliable, up-to-date, figures on all forms of MS DMT use on a country by country and locality basis; Care funders should provide adequate facilities for the early identification of MS and monitoring treatment outcomes. This includes assuring good access to neurologists and to MRI scanning (Ireland has the lowest number of neurologists per heard in Europe and long waiting times to access MRI) as well as maintaining high quality disease registries; People with MS and organisations representing them have a vital part to play in raising MS care standards, preventing access inequalities and contributing to pharmaceutical literacy Download TaP-MS (Treatment Expectations and Priorities of People with MS) survey Download Greater Expectations: the Future Hopes of People with Multiple Sclerosis Further reading MS Ireland's Time to Act report on the importance of early diagnosis and treatment in MS MS Treatment Decisions - MS Ireland’s guide to making informed decisions about MS treatment options
Many people with multiple sclerosis experience falls, which can have significant consequences for the individual. The MS Research Team at the University of Limerick, led by Professor Susan Coote, have developed a falls prevention programme for people with multiple sclerosis and we would like to assess how suitable and effective the programme is. What do I have to do? The 'Better Balance' programme consists of 12 weeks of twice-weekly classes run by a chartered physiotherapist. The classes will consist of 45 minutes of exercises aimed at improving balance, strength and walking and 45 minutes of education on topics such as fear of falling, task analysis, getting up from the floor, what devices can assist you – these will include group discussions and problem solving. There will also be a home exercise programme provided to each participant. The classes will take place in Limerick and Galway and will be offered in the morning and/or evening depending on the preference of the individuals attending. Beginning in January, interested individuals will be asked to attend an assessment day where a chartered physiotherapist will test your strength, balance, walking and feelings about falls. We will then give you falls diaries to complete for two months. This is like a calendar where you will write down if you had a fall. After these two months, the classes will begin. When the 12 weeks of classes are finished you will again have your strength, balance, walking and feelings about falls assessed and complete another two months of falls diaries to see if the intervention has been successful. After completing the two months of falls diaries you will attend one last assessment with the researcher to assess your strength, balance, walking and feelings about falls. Who can participate? To be eligible to take part you must have multiple sclerosis, be over the age of 18 years, have experienced a fall in the last three months, and be able to walk for 10 metres with or without a walking aid (one stick or one crutch). Get in touch If you would be interested in taking part in this study or have any further questions about the study you can contact the researchers by calling Laura Comber on 086 0231335 or email Laura.firstname.lastname@example.org or Prof. Susan Coote on (061) 234278 or email email@example.com
Letter to Minister Simon Harris regarding ocrelizumab Today, (Monday, 11th December) MS Ireland have written to Minister for Health Simon Harris regarding new medication ocrelizumab, which is the first ever medication to be indicated for primary progressive MS. MS Ireland are asking the Minister to take action to ensure that this medication is made available to people with MS in Ireland as soon as possible. Further reading Download letter to Minister Simon Harris. Information about ocrelizumab Get in touch Questions or comments regarding this letter can be directed to Harriet Doig, Information, Advocacy and Research Officer – firstname.lastname@example.org
Irish life sciences company, Genomics Medicine Ireland (GMI) have announced an important scientific research study aimed at unlocking the mystery of the genetic and lifestyle factors that contribute to MS. Volunteers with MS currently being treated at St. Vincent’s University Hospital, Tallaght Hospital, Cork University Hospital or Altnagelvin Hospital in Derry are invited to participate in the study which aims to identify these factors in order to find better treatments, diagnoses and, ultimately, a cure for MS. GMI also hopes to rollout additional study sites around the country in future. MS Ireland welcomes this exciting new study as an opportunity to further understand the causes and mechanisms of MS, which will hopefully lead to better management and treatment of the disease in the future. Further information on the study is available in the third issue of our research eZine, Interested volunteers should speak with their clinical team at one of the current research sites for more information. Further information: Read the full press release from Genomics Medicine Ireland RTE News
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