Update October 2025 

We are Improving the Financial Support for the Motor Neurone Disease Community

We’re currently reviewing the Financial Support we offer our community, we want to ensure it is timely, tailored, and truly reflective of individual needs and experiences.

From emotional well-being to practical assistance, our goal is to create clearer, more connected services which help people live well, for longer.

Our research shows one in three people with MND feel lonely or isolated and many face challenges accessing the right support to maintain the friendships, interests, and connections they valued before diagnosis.

Others encounter barriers to securing assistive technology or making essential home adaptation - limiting their independence and quality of life.

We want to offer more choice and control and to enhance the well-being of people living with MND and their families. Through our grants programme, we hope individuals feel supported and better equipped to manage their condition.

What have we been working on?

  • Changing and adapting the guidelines to better suit the community. Making the guidelines clearer and more concise, to help to make the process of applying for financial support more robust.
  • Consolidating our grants, from eight grant options to four support funds, to simplify and speed up the application process, making access easier.
  • Working with a collaborative project group, getting insights from healthcare professionals, volunteers and people living with and affected by MND. Insights from people with first-hand experience of dealing with the grant application process is incredibly valuable to us.

Please complete our survey here to share your feedback with us.

Thank you for your continued support.

 

Update July 2024 

Although it's been a while since our last update, we've been working hard behind the scenes, understanding the crucial role our grants program plays. Our goal is to make changes that benefit all. 

What have we done since the last update? 

  • Formed a Collaborative Project Group: This group includes volunteers, people living with and affected by MND, health and social care professionals, and staff members.
  • Application Form Improvements: The group has advised on changes to our application forms, which have now been launched and the link can be found Here 

Still to come 

  • Website Enhancements: We're reviewing and improving our grant web pages to make them more user-friendly.
  • Policy Reviews: Our guidance and policies, including those on retrospective funding, are under review. 

We have made significant progress but recognise there is still work to be done in raising awareness and extending the reach of our grants program. Additionally, we need to regularly review our grant limits and categories to ensure they meet the needs of all. 

We are committed to this ongoing effort and will keep you updated through this page. 

2022 Evaluation

In 2022 we carried out an evaluation of our financial grants programme to assess its effectiveness, reach and impact. 

The evaluation was a collaborative project involving nearly 600 people, including those living with and affected by MND, branch and group volunteers, health and social care professionals, and staff.
 
The project group carried out a detailed benchmarking exercise, reviewed various external reports and analysed our grants data, which found that the current programme is working well, but we do have a few improvements to make.  
 
Within that work, we received moving feedback about the impact grants had made to families affected by MND, saying they helped them to feel supported, gave them a renewed purpose and helped to make special memories.
 
We're really pleased that 92% of people living with MND who responded to our survey thought the application process was straightforward. You also told us that how we could improve our support, so here's how we are planning to make it even better:-

  • Raise awareness of our grants programme. We learned that some people didn’t know the Association offered grants, so we’d like to do more to raise the profile of this support and help more people affected by MND.  
  • Improve guidance about the application process, including updating our grant application form and the information on our website.  
  • Consider retrospective funding for some applications.
  • Regular review of grant limits and categories.  

Our grants programme is integral to the support the MND Association provides, and we want to reassure you that it is very much here to stay. Our primary aim with this project is to better support our community and help us fulfil Our Promises to you.
 
This webpage will be updated frequently with details of changes and improvements to our current financial grants programme.

See more information about our current grants

Page last updated: 26/07/2024