Motor Neuron Disease (MND) also known as Amyotrophic Latera Sclerosis (ALS) is a rare neurological condition that progressively damages parts of the nervous system. It leads to muscle weakness over time slowing down important muscle activity such as gripping, walking, speaking, swallowing, and breathing. MND is a rare condition currently with no cure that affect around two in every 1000,000 people in the UK each year. Living with MND is challenging and terrifying for the diagnosed and their families.
However not all is bleak as MND awareness has recently increased. Rob Burrow, former English professional ruby league player, was diagnosed with MND in 2019 and lost his ability to speak without help in 2020. Rob was awarded an MBE last year for his work raising awareness of MND since his diagnosis and is due to be the first non-verbal person to read a CBeebies bedtime story. Rob will use his Eyegaze, the world’s most advance eye-drive communication devise, to read the story Tilda Tries Again by Tom Percival at 6.50pm on Saturday 3rd December on CBeebies. This is a huge achievement the whole MND community will be celebrating.
The Motor Neuron Disease Association (MNDA) is the official MND charity focused on improving access to care, research and campaigning for people affected by motor neurone disease. Their website https://www.mndassociation.org/about-mnd/ is a fantastic resource for learning more about MND, on going research and most importantly how you can get involved. There is a direct donation link on their page as well as ways you can fundraise as an individual. Fundraising is a great way to ensure the MNDA can continue their research.
The MND Tee, founded by Emma Frampton in January 2021 following the passing of her Dad who had MND, is another great organisation aiming to create awareness for MND. They create sustainable, comfortable, and meaningful products with their profits going directly to the MNDA. Having purchased from their myself I having nothing but good things to say! Click here for their website, keep your eyes pealed for their new collection coming soon.