Can you help us work towards a world where MND is treatable and ultimately curable?
There's still no treatment that stops MND, or that significantly slows it down. We will build on our respected position as a global leader in MND research, supported by people with MND and the MND research community. We're aiming to increase financial investment in MND research from a range of sources, advance current scientific knowledge of MND, and turn discoveries into treatments.
We may ask you to take part in a research trial, or share your lived experience of specific treatments. Varied and diverse participants and feedback is vital to helping strive towards a treatment and, ultimately, a cure for this cruel disease. Remember, every experience of MND is different and unique to the person, family, and/or carer going through it. From reactions to treatments to timing feedback, we can work together to beat MND.
Live opportunities
Share your experience of MND
EUpALS (European Organization for Professionals and Patients with ALS) Industry Partner Novartis, in collaboration with consultancy firm VOZ Advisors, would like to understand the everyday experiences of people with MND and their carers. Discussions will be held virtually and will total three hours over two calls. During these calls they will ask about topics such as experience with the healthcare community, challenges of treatment, and impact on daily life.
They are looking for 2 people from the UK living with MND or caring for someone with MND.
More specifically, they hope to hear from people impacted by MND (sporadic or familial) and their caregivers who:
- Have experience with genetic testing.
- Belong to a diverse group.
Participants will receive fair market value for their time.
If you’re interested in taking part, please contact Eleanor Ndaiga or Rachael Mercer.
Ideas to get you started
Like, comment, share
Social media is a powerful place. It allows us to connect with people we may never meet in real life. It gives us the resources to share our stories and communicate with people in similar situations, or professionals who can give advise and support. It also helps the Association extend it's reach, ultimately increasing awareness and reminding people far and wide why research into treating - and ultimately curing - MND is so vital.
Are you following our Twitter account dedicated to all things research? This is a great way to not only stay up to date with the latest from our research department, but share posts with your Twitter network while increasing awareness and engagement.
Helpful resources
MND research blog
If you'd like to find out more and take a behind the scenes view of MND research, why not join our online blog?
Association researchers share news on recent trials, celebrate collaboration with other MND focused charities, and provide conference highlights - so you can enjoy the best of the day, whilst in the comfort of your own home.