MND / ALS
Heart of Midlothian Football Club have committed their support to helping fund a cure for motor neurone disease (MND) by naming one of Scotland’s leading neuro charities as the men’s shirt sponsor for the upcoming season.
MND Scotland will have their logo placed on the front of each jersey for the 2021/21 campaign in a bid to raise both awareness about the condition and money for the charity. The Edinburgh-based team are also using the deal to pay tribute to club legend and former captain Marius Žaliūkas, who tragically lost his battle with MND last year. The average life expectancy for MND patients is just 18 months after diagnosis according to the charity, but the Lithunaian defender lived for the condition for nearly seven years. Žaliūkas passed away aged 36 and was adored by fans, being part of the team that won the 2012 Scottish Cup.
Eye tracking technology is proving to be a lifeline for people living with ALS, delivering vital communication assistance which helps to break isolation. Here, leading healthtech influencer and ambassador for health innovation Gil Bashe discusses the power of such intervention
The moment the flood of ice-cold water poured over my head, there was shock and silence; seconds afterward, my senses returned. I blurted out: “That’s cold!” Family nearby laughed, the moment passed, and the video of my ALS Ice Bucket Challenge was shared online. Mission accomplished, or so one might think. My state of frozen speechlessness was over in a moment, but for people diagnosed with ALS (amyotrophic lateral sclerosis also known as Lou Gehrig's disease), that state doesn’t just last for a moment. It’s an ongoing, harsh and frightening reality that makes life more difficult and can actually shorten it.
A former RAF serviceman with motor neurone disease (MND) is ticking one thing off his bucket list to raise money for charity as he completes a skydive.
51-year-old Lez Wainwright was diagnosed with the condition in February and began thinking about all the things he wanted to do in life. One of these is a skydive and even though he had served in the Royal Air Force (RAF) for nine years, it is something he has never done before. “After my diagnosis I decided to do a bucket list,” he said. “A skydive was one of the things I’ve always wanted to do. “Originally I was too scared but I thought now is my chance to get it out the way with and get it done.”
A £1million fund has been created to lead new research into potential treatments for Motor Neurone Disease (MND) through the efforts of an iconic challenge by Kevin Sinfield.
Kevin, director of rugby at Leeds Rhinos, raised over £2million through his 7 in 7 Challenge, inspired by his former team-mate and close friend Rob Burrow. Rhinos legend Rob was diagnosed with MND in December 2019, and Kevin completed seven marathons in as many days to help boost badly-needed research into the condition. Now, with £500,000 of the money raised through the 7 in 7 Challenge ring fenced for research, that sum has been matched by medical research charity LifeArc.
Pioneering treatments could be developed for people with motor neurone disease (MND) after a new study shed light on how the damage to nerve cells can be repaired by improving the energy levels in mitochondria.
Researchers have discovered that, in human stem cell models of MND, the axon - the long part of the motor neuron cell that connects to the muscle - is shorter than in healthy cells.
Rolls-Royce through its data technology arm, R2 Data Labs, has partnered with the Motor Neurone Disease Association and some of the world’s leading technology companies, including Accenture, Computacenter, Dell Technologies, Intel and Microsoft, to pool technology and expertise to improve the lives of those living with extreme disabilities. For the first time, those living with MND will be able to have a conversation through a computer using their own voice, words, colloquialisms and accent, without pausing to type answers or being restricted to a prescribed set of words. The new technology, called Quips, uses voice-banking and AI to learn a person’s unique language style and use it in conversation.
The UK Motor Neurone Disease Clinical Studies Group has launched an updated version of its online portal. It enables users to find out about all the MND clinical research studies taking place across the UK.. The MND CSG’s aim is to “bring together expertise and enthusiasm to develop and improve both the quality of MND research in the UK, and the number of research studies available for people living with MND to participate in nationally”.
The document, delivered to 10 Downing Street, urges the government to give people with a terminal illness easier and quicker access to the benefits they are entitled to. Currently, unless a medical professional signs a form saying the person has six months or less to live they are forced through a laborious process of form-filling, interviews and assessments. David Setters, who is living with MND and consultant neurologist Dr Nik Sharma were among those who delivered the petition; as was Downton Abbey actor Jim Carter.
The search for a motor neurone disease cure has uncovered a way of potentially slowing the disease by boosting energy production in the central nervous system.
