This is us, the MND Association. Renewed, united and driven every day to make change happen.
Every day we support people affected by motor neurone disease, campaign for better care and fund ground-breaking research.
Because with MND, every day matters.
Association Visitors (AV) play a vital role in supporting people with and affected by MND. They offer guidance, support in grant applications and most importantly, become a friend and a listening ear. Chris became a volunteer in 2005 after his wife was diagnosed with MND. He is now an AV. Learn about his experience.
If you are travelling outside of your geographical area to receive the treatment, our tofersen travel support fund is available.๐https://t.co/WuMISbGfIv
Today, we supplied evidence to support the approval of tofersen as a treatment for people with SOD1 MND.
The window for submissions to the National Institute for Health and Care Excellence (NICE) closes on Thursday (4 June), with assessors now deciding whether the drug should be made available on the NHS.
Quotes from interviews, survey results and the nomination of 'patient experts' with a lived experience of MND were included in our submission of evidence. Read more here: https://t.co/05yX6jRonW
This summer, the @mndassoc are asking cricket fans to turn their passion for the sport into hope for people with motor neurone disease ๐
Find out more about how your club can help ๐ https://t.co/gHPWyd7GiQ
#Ad
333 Association Visitors (AVs) provide emotional and practical support to over 1,200 people affected by MND.
Learn more about AVs here: https://t.co/H2zrfMBW0k
To mark Volunteersโ Week, we visited a support group session run by the Milton Keynes Branch. It is one of the 150+ support groups run by our branches and groups, virtually and in person.
Today, the Longitude Prize announced the launch of a Patient Advocacy Group to help bridge the gap between the research work and the daily realities of MND/ALS. Its wonderful to see people with MND helping to guide this important work.
As principle funder, we are proud to back innovative researchers looking to discover new treatments by harnessing AI as we strive to achieve a world free from MND.
Read more: https://t.co/9i9YYuciHH
NHS continuing healthcare (CHC) can be a lifeline for people with MND. But too many families face a process thatโs confusing, inconsistent, and unfair.
Weโve joined 11 other charities calling on the Health Secretary to fix NHS CHC once and for all.
Sign the petition below โ๏ธhttps://t.co/sHZsAYEd6W
Over 80 MND Association branches and groups fundraise, campaign, raise awareness and support people with MND across England, Wales and Northern Ireland.
#VolunteersWeek
As a volunteer social media officer, Amelia is keen to drive the conversation on MND-related campaigning and legislation. Learn more about her experience as a volunteer.
#VolunteersWeek
Happy June! Wishing a massive good luck to everyone taking part in our June challenge - 21 Minutes of Activity a Day in June.
Fancy joining the team? It's not too late to sign up! https://t.co/lKfHV88pyU
Find out more about volunteering, the roles you can choose from, and how it helps those affected by motor neurone disease, below.
โ๏ธ https://t.co/865qEdfyKR
#VolunteersWeek
Itโs Volunteers' Week โ a chance to celebrate the incredible people who raise awareness, campaign, and support everyone affected by MND. Hereโs a look at our volunteers in numbers.
#VolunteersWeek
The process which provides people with MND with funds to help them make vital home adaptations moves too slowly and is too outdated. It means people like Martin had to drain his savings in order to live safely in his home. People with MND do not have time to waste.
Help unlock the door. Write to your councillor.
๐https://t.co/fpDed6gcGd