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Your Branch Name AGM

Join our AGM to learn about the work of our national charity focused on MND care, research, and campaigning. Discover how we provide support, fundraising, and raise awareness. Be a part of our vision for a world free from MND.

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Your Branch Name AGM

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  1. Your Branch Name AGM Welcome Branch role/presenter name

  2. We are the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning • Founded in 1979 • 9,000 members • 7,000 people volunteer their time • Including over 300 Association Visitors • 180 staff • 89 volunteer-led branches and groups Our vision: a world free from MND

  3. 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

  4. National care and support 22 Around 3,500 people with MND use an Association funded care centre (approximately 70% of people living with MND)

  5. National care and support We have over 320 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 and at regular meetings.

  6. National care and support Our Benefits & Advice service was launched in April 2017 and offers tailored and specialist benefits advice. During 2018, 1250 people accessed the service and over £2.25 million of benefits were identified. 0808 801 0620 England & Wales 0808 802 0020 Northern Ireland www.mndassociation.org/benefitsadvice

  7. National care and support Monday to Friday 9am - 5pm and 7pm - 10:30pm Over 9300 calls received in 2018 from people living with and affected by MND, their carers and families, and health and social care professionals.

  8. National care and support Over 39,000publications downloaded from our website Over 23,000 information factsheets and publications distributed

  9. 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 £500) 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 Carer’s Grant (up to £500) Supporting the main unpaid Carer (aged 19 and over)

  10. 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. wheelchairs@mndassociation.org

  11. 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).

  12. 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

  13. 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 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.

  14. National fundraising • During the year 2,700 volunteer fundraisers raised over £2.4m. These supporters who give up their time to raise funds are vital to funding our growing programme. • Over 1,800 supporters took part in an organised event raising over £1.2m. • Over £1m 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.

  15. National fundraising The Christmas Lifeline Appeal featuring our communication aids work was our most successful appeal in 2018 raising over £150k and exceeding target by 48% We raised a total of £855k through trust income, including: • £75k from The Wolfson Foundation for equipment • A pledge of £200k from The Linbury Trust • £108k from the J P Moulton Foundation towards MIROCALS

  16. London City Swim 2018 Second year of event Five people with MND took part Raised £120k All costs covered by corporate sponsorship Next: 20 September 2019

  17. National fundraising highlights The Broad Appeal Ball at the Dorchester in September made a net profit of £200k. The largest such event in our history. Our partnership with Investec has raised some £50k and is on course to reach its target of £100k by early summer 2019. Overall income from corporate supporters was the second highest in the Association’s history.

  18. Walk to d’feet MND and bakeit! Walking and baking are two of the most popular fundraising activities. Walks in 2018 raised a record breaking £78k from 38 walks for branches and groups. To take part please contact the Fundraising Team on fundraising@mndassociation.org or call 01604 611860

  19. Community 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

  20. 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

  21. Legacies • 2 successful national legacy events in 2018 • Launching soon: • Regional events with virtual reality research lab tour • Local event leaflet • Legacy toolkit

  22. National awareness raising 2019 marks the 40th anniversary of the MND Association. Throughout 2019 this specially designed logo can be used.

  23. National awareness raising Key dates across the Association’s history form the 40th Anniversary Timeline https://www.mndassociation.org/get-involved/volunteering/40th-anniversary/

  24. 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.

  25. Accessible homes and adaptations HOW YOU CAN HELP SIGN THE PETITION: www.mndassociation.org/scrap6months SHARE YOUR STORY: Email – campaigns@mndassociation.org Phone – 020 7250 8447

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

  27. 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

  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.org

  29. 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 Glasgow –the 29th International Symposium on ALS/MND.

  30. Research The overall value of our research portfolio on 31 December 2018 was £16 million, supporting 90 research grants. The Association is currently funding 80 research projects, out of which 13 are PhD studentships, and 16 are Fellowships.

  31. The future: Research In 2018, the Association became 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).

  32. 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).

  33. 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 ongoing support and generosity. 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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