1. Your Branch Name AGM Welcome

2. Alison Noakes Regional Care Development Adviser Your Name Branch Chair Your Branch Name Motor Neurone Disease Association

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

4. Founded in 1979 9,000 members 7,000 volunteers (300 Association Visitors) 170 staff 88 volunteer-led branches and groups MND Association

5. 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 88 branches and groups across England, Wales and Northern Ireland Your branch name

6. Around 3,500 people with MND use an Association funded care centre (approx 70% of those with MND) National care and support

7. Our 300 Association Visitors 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 and at regular meetings. National care and support

8. We are exploring how we can offer a welfare benefits advice service to people with MND. We have trained four volunteer Benefits Navigators as part of a pilot project in Greater Manchester. In the first six weeks of operation, we were able to claim benefits for people with MND and their carers worth over £100,000. National care and support

9. Over 600 calls a month from people affected by MND and health and social care professionals

10. National care and support

11. Improving care and support

12. 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 Our support

13. National fundraising £18.1 million raised in 2014/15: £8.4 million from central fundraising £2.5 million by branches and groups £5.5 million from legacies £1.7 million earned income

14. National fundraising For every £1 received, 68p went immediately and directly to fund research, care, campaigning and awareness raising. For every £1 spent on fundraising, £3.60 was raised in return. This means more than the total value of each donation goes directly to the programme.

15. National fundraising highlights Our ‘Big’ Appeal to supporters in February focused on research Project MinE, a unique global research study in search of the genetic patterns that hold the key to MND. It has been our most successful appeal to date raising £114,000 and was highly commended at the 2015 Third Sector Awards. The Wolfson Foundation have been strong supporters of the Association over the years and we were delighted to be awarded a grant of £73,000 towards the provision of communication aids for local speech and language therapy teams.

16. National fundraising highlights During the year 4,376 volunteer fundraisers raised over £4.4 million. These supporters who give up their time to raise funds are vital to funding our growing programme, and the number of events being held in this way has doubled over the last 5 years. Over 1,200 supporters took part in an organised event raising well over £1 million. Between the 853 Tribute funds and Fightback Funds that were donated to during the year, over £1 million was raised to fund our work

17. We launched a mass participation event, Silence Speaks, to raise funds during Awareness Month about the difficulties of communication associated with MND. National fundraising The event has been a great success and for 2016 we have added many resources and ideas, together with a new teacher and youth leader guide, to engage young people in Silence Speaks. www.mndassociation.org/silencespeaks

18. 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 Our fundraising

19. National awareness raising Our 2015 Awareness Month campaign ‘Last Summer’ built on awareness generated by the Ice Bucket Challenge phenomenon of 2014. It featured posters across the national rail network, London underground, bus sides and airport sites in Northern Ireland, a national cinema advertisement and a varied social media programme. Plans for Awareness Month 2016 are well underway.

20. 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 Our awareness raising

21. 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. National and local campaigning

22. Sign up today at www.mndassociation.org/campaignwithus

23. Since handing in 33,630 signatures of support for the MND Charter to 10 Downing Street in June 2015, a new campaign has launched! Champion The Charter aims to get councils to adopt the MND Charter New campaign website: www.mndcharter.org National and local campaigning

24. 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

25. We work with and support scientific and clinical research communities in the UK and worldwide. Almost a thousand delegates attend our annual research conference – the International Symposium on ALS/MND. Research

26. The overall value of the Association’s research portfolio is £8 million. The Association is supporting 65 research projects worth more than £2 million. Research

27. The future: Research In 2016, the Association will be investing in some major international research programmes The MIROCALS Drug Trial will investigate whether existing drug Interleukin-2 has potential as a new treatment for MND. Project MinE which aims to identify the genetic make-up of 15,000 DNA samples from people with MND.

28. 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.orgwww.mndcharter.org

29. 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 including 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.................................................................................................................... Our 20 th Care Centre will be opened in Brighton this year.

30. "The MND Association strongly welcomes the publication of the NICE guideline on MND. This long awaited guideline has come about after more than four years of campaigning by the Association and our supporters. It is a hugely significant document that sets out in detail what good care looks like and how it should be delivered. The future: Care NICE guideline on MND Published 24/2/16 “It will shape future care and have a huge influence over the quality of life for people living with MND and their families and carers”. Sally Light Chief Executive MND Association

31. Publication is just the beginning...  It will be a central part of our campaigning to improve MND care next year and beyond  It will also help us to work locally to affect outcomes in care delivery for people with MND  The work starts now in promoting the guideline to all parts of the NHS and social services  And developing tools to help professionals  And tools to help people with MND, their families & carers understand what care they should expect  We will also review their research recommendations NICE guideline How will it be used and next steps

32. NICE Guideline: Thank you We will continue to work with our members and supporters to ensure the NICE guideline on MND has a positive impact on the care and support available to people with MND in England, Wales and Northern Ireland Please visit the website for further information: www.mndassociation.org/nice www.mndassociation.org/nice

33. The future: Care Our Regional Delivery Managers lead our regional teams to deliver our strategy and ensure we meet the needs of people with MND in their area through the implementation of a regional delivery plan. 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.

34. 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).

35. 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.

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