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Your Branch Name AGM

Your Branch Name AGM. Welcome. Your Name Branch Chair Your Branch Name Motor Neurone Disease Association. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning. Our vision: a world free from MND. MND Association.

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Your Branch Name AGM

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  1. Your Branch Name AGM Welcome

  2. Your Name Branch Chair Your Branch Name Motor Neurone Disease Association

  3. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning Our vision: a world free from MND

  4. MND Association • Founded in 1979 • 9,000 members • 7,000 people volunteer their time, including over 345 support volunteers • 180 staff • 89 volunteer-led branches and groups

  5. Your branch name Add background information such as.... • We were founded in... • The area we cover is... • We have ...X... volunteers involved • We represent the MND Association at a local level and focus on... • providing support, • fundraising, • raising awareness • campaigning • We are part of a network of 89 branches and groups across England, Wales and Northern Ireland

  6. National care and support 21 Around 3,300 people with MND use an Association funded care centre (approx 70% of those who have MND)

  7. National care and support We have over 345 support volunteers who support over 1,000 people with MND, their families and carers across England, Wales and Northern Ireland through home visits, telephone, email and text support, by organising support meetings and being present at clinics. .

  8. National care and support The Benefits Advice Service was launched in April 2017 The service is available by telephone, e-mail and webchat and ensures that people with and affected by MND can claim the benefits to which they are entitled. 0808 801 0620 E&W 0808 802 0020 NI www.mndassociation.org/benefitsadvice

  9. National care and support Monday to Friday 9am - 5pm and 7pm - 10:30pm Over 8600 contacts per year from people living with and affected by MND, their carers and families, health and social care professionals and support volunteers. Translation service available through Language Line.

  10. National care and support Over 55,000publications downloaded from our website Over 37,000 information factsheets and publications distributed

  11. Equipment available for loan National care and support

  12. National care and support Care Grant (up to £1500) Funding the provision of equipment or a service where there is an assessed need Quality of Life Grant (up to £1000) Funding to maintain Quality of Life Young Persons Grant (up to £250) To support children and young people (18 and under) directly affected by MND up to 12 months post bereavement Carer’s Grant (up to £500) Supporting the main unpaid Carer (aged 19 and over) up to 12 months post bereavement

  13. Wheelchairs The Wheelchair Support Service provides information, advice and low-level advocacy on wheelchair-related issues. The service also provides funding for wheelchair-related equipment and add-ons that are not provided by statutory services, such as seat risers, attendant controls and power packs. This is via the Support (Care) Grant application process.

  14. Communication Aids • Support Grants: • For funding communication aids that we are not able to loan. This may include iPads, apps or specialist text to speech devices. It also includes funding to pay for voice banking, up to a maximum of £500 per person. • Equipment Loan: • Where possible we try to loan AAC equipment if the need cannot be met by statutory services or it is not timely. Predominantly these loans have been for Lightwriters, iPads or voice banking equipment (laptop and/or headset microphones).

  15. The NICE guideline on MND • The NICE guideline on the management and care of people with • MND was published in February 2016. • So far: • We have developed information for people affected by MND to help their understanding of what the guideline is and how it can be used to improve their care • We have been promoting the guideline key parts of the NHS and social services • We have developed an audit tool to help professionals assess their current level of service against the guideline, and help them to focus on areas that need to be improved.

  16. Our support Include information about the support your branch has provided over the last year, e.g. • Support meetings – type/ format, when/ where you hold them, number of people who attend, • Carers support meetings – when/ where you hold them, number of carers who attend • Number of AVs linked to your branch and how many people with MND they have supported • How many Support Grant applications you received and examples of things you funded

  17. National Fundraising 2017 Income £18.4 million raised in 2017: • £10.4 million from central fundraising • £2.9 million by branches and groups • £4.2 million from legacies • £0.9 million earned income

  18. National Fundraising2017 expenditure For every £1 spent on fundraising, £3.55 was raised in return. This means more than the total value of each donation goes directly to the programme.

  19. National fundraising highlights • The research appeal to supporters in September featuring Dr Alex Whitworth was our most successful appeal during 2017 raising over £98,000, exceeding our ambitious target by £26,000. We raised total trust income of £941k including: • Over £400k from smaller trusts • £250k pledged for 2018 from J P Moulton Charitable Foundation & The Wolfson Foundation • £185k from a family trust for research.

  20. National fundraising highlights • During the year 2,500 volunteer fundraisers raised over £2 million. These supporters who give up their time to raise funds are vital to funding our growing programme. • Approx 1,500 supporters took part organised sporting events raising well over £1.2 million and over 500 took part in our events raising over £246k. • Over £1.6m was raised through donations to MND Association Fightback Funds and Tribute Funds, set up by people living with MND or who have lost someone to the disease, to help fund the Association’s work.

  21. National fundraising highlights Our largest ever corporate partnership with Credit Suisse has now raised some £750k against a target of £620k. Funds are supporting: care centres, voice banking & Project MinE. Our wider corporate programme raised nearly £500,000. This is some 40% above traditional levels. The Association also received an anonymous donation of £400k from a benefactor. The Broad Appeal and other friends began planning for a fundraising ball at the Dorchester to be held in autumn 2018.

  22. National fundraising • We offer three mass participation fundraising events, the newest of which is Silence Speaks, to highlight one of the challenges 80% of people living with MND face. It enables supporters to experience voice silence and find alternative ways to communicate. Silence Speaks fundraising packs, also available for schools and teams have lots of materials and ideas to help make your Silence Speaks activity fun too! www.mndassociation.org/silencespeaks

  23. Walk to d’feet MND and bakeit! Walking and baking are two of the most popular fundraising activities. Supporters can raise funds and awareness for branches and groups by taking part in Walk to d’feet MND and bakeit! events. Contact the Fundraising Team on fundraising@mndassociation.org or call 01604 611860.

  24. Our fundraising Include information here about your fundraising activities over the last year, e.g. • How much you raised • Examples of some of the events you held • Thank you to everyone who supported your events and who raised money on behalf of your branch

  25. National awareness raising Our 2017 Awareness raising campaign was called ‘My Eyes Say’ It focused on how the eyes are so important for communicating for many with MND. We had 1,700 posters around England, Wales and Northern Ireland

  26. National awareness raising We also secured support from celebrity patrons with Stephen Hawking appearing on a poster at Waterloo station, Eddie Redmayne at Waterloo and Benedict Cumberbatch at Kings Cross. The poster ‘reach’ was 74million (the number of times someone had the opportunity to see one of our posters).

  27. National awareness raising On Global MND Awareness Day on 21 June there was a ‘takeover’ of the media eyes in Birmingham - three giant eye shaped screens around New Street Station. The screens showed campaign materials such as video and digital adverts as well as #MyEyesSay messages which were shared on social media.

  28. National awareness raising It was also great to see so many landmarks lit up in Association colours on global MND awareness day (21 June)

  29. Our awareness raising Include information here about your awareness raising, e.g. • Number of visitors to your website • Number of followers and likes of your social media accounts • How many editions of your newsletter have there been and how many people this is emailed/ sent to • Your events/ activities during Awareness Month • Examples of some of events you’ve attended

  30. National and local campaigning We campaign to ensure everyone living with MND has the care and support they need. It is a key part of our mission. Campaigning aims to reach the people who have the power to change things. We do this by engaging with national and local decision makers about particular problems people face. Campaigning is more successful when those living with and/or affected by MND are involved and share their stories.

  31. National and local campaigning The financial impact of motor neurone disease

  32. National and local campaigning General Election 2017

  33. National and local campaigning MND Reception 2017

  34. National and local campaigning www.mndcharter.org

  35. National and local campaigning Sign up today at www.mndassociation.org/campaignwithus

  36. Our campaigning Include information here about your campaigning, e.g. • the activities of your Campaigns Contact (if you have one) • how many members in your area are signed up to the Campaign Network (ask you Local Campaigns Manager for this information) • local campaigning activity • supporting national campaigning activity e.g. Encouraging your council to adopt the MND Charter

  37. Research We work with and support scientific and clinical research communities in the UK and worldwide. More than 1,200 delegates attended our last annual research conference in Boston, USA –the International Symposium on ALS/MND.

  38. Research The overall value of our research portfolio on 1st January 2018 was £15.5 million, supporting 96 grants. The Association is currently funding 37 research projects and 20 PhD studentships.

  39. Current: Research In 2017, the Association invested in some major research programmes • The MIROCALS Drug Trial looking at Interleukin-2 as a new treatment for MND. As of Jan 2018, 56 pwMND have been screened and recruited into the trial. • Project AMBRoSIA which aims identify new biological ‘fingerprints’ causing MND. As of Sept 2017, 56 pwMND have been recruited into the project.

  40. The future: Research In 2018, the Association will be part of a Horizon 2020 funded International Consortium The TUDCA-ALS Drug Trial will look at the safety of using TUDCA acid (a naturally occurring acid that has been used as a treatment in Chinese medicine for centuries) in addition to riluzole as a therapeutic treatment for MND. The project aims to recruit 440 patients from across Europe (Italy, Germany, UK, Ireland, and the Netherlands).

  41. The future: Campaigning and Awareness The Association will continue to build our network of local campaigning volunteers to secure improvements to the services people with MND and their carers rely on. This includes using the MND Charter to raise awareness in councils across England, Wales and Northern Ireland through our Champion the Charter on your doorstep campaign. Find out more at www.mndcharter.org

  42. The future: Care We are ensuring more people can access appropriate care when they need it, by expanding our network of specialist care centres and by increasing community based care. ................................................................................................................... We are developing new services to support the needs of children and young people and have developed new publications and a grants scheme. ................................................................................................................... We are expanding our network of volunteers to ensure we can provide more locally based support for people with MND their families and carers. ................................................................................................................... We are increasing our training programmes for health and social care professionals including new online resources for nurses, GPs and other healthcare professionals. ................................................................................................................... As part of our care centre programme, the North Midlands Care Network (Stoke-on-Trent) will open later this year.

  43. The future: Care Our Regional Delivery Managers lead our regional teams to deliver our strategy and ensure we meet the needs of people affected by MND in their area through the implementation of a regional delivery plan and a series of Local Action Plans.  This includes coordinating our work in care, campaigning, volunteering and fundraising, as well as ensuring everything we’re doing locally reflects the wider plans and priorities of the Association.

  44. The future: Support Volunteer Project • A fresh look at how volunteers support people affected by MND • Improvements to what we do now • Association Visitors remain key • But also looking at new ideas • 2 year programme of work

  45. The future: Support Volunteer Project • Project is beginning with listening exercise • We are keen to hear your ideas – big or small • Full details at www.mndassociation.org/supportvolproject • Contact: Tim Atkinson on 01543 415121 or tim.atkinson@mndassociation.org

  46. The future: our branch Include some of your plans for the next year, and encourage people to get involved. (include who they need to get in touch with to get involved).

  47. The future On behalf of our branch, the MND Association and all those we support, thank you. Your support is strengthening our fight against MND. But there is still no cure. To continue our work, and to help us achieve our vision of a world free from MND, we rely on your on-going support and generosity.

  48. Keep in touch Branch website: add web address Follow us on Twitter: add account name Like us on Facebook: add page name

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