MND / ALS
An NHS Trust has received funding from the My Name’5 Doddie Foundation to explore whether some types of medications already used to treat other conditions could slow progression of motor neurone disease (MND).
Rugby league legend Kevin Sinfield is taking on his next hugely ambitious fundraising challenge, after raising £2.7million last year through his efforts to support people living with MND and research to change the future.
From her father’s battle with MND and a lack of appropriate care and support came Abbie Coutts’ desire to make a change within the medical profession. Here, she shares her story of becoming an educator, dedicated to equipping healthcare workers with greater ability to support patients and their families
Plans have been unveiled for a new purpose-built care centre of excellence for people living with MND, with the £5million fundraising appeal spearheaded by Rob Burrow.
Two fundraisers have raised over £150,000 for the MND Association through their gruelling Olympic challenge, the Spennylympics.
A mother and son team who have devised a pioneering standing wheelchair are looking to partner with a manufacturer to bring their prototype to fruition.
The Walking Wheelchair enables people with limited use of their legs to assume a standing position, using a saddle therapy seat and Segway-style wheelbase. Its design, which is aimed at people living with conditions including Muscular Sclerosis, Cerebral Palsy, Motor Neurone Disease and spinal injury (L1-5), is protected by patent and has already won awards for its innovative design. It differs from what is already available through its saddle seat lifting the user’s weight vertically to standing, rather than a conventional seat which tips, and has a gyroscope to balance the standing weight instead of a counterweight. It also has a two wheel wheelbase with a tight turning circle rather than the standard six-wheel base.
A pioneering gene therapy programme which could pave the way for novel treatments for neurodegenerative diseases has been launched.
The research has been awarded £513,141 from LifeArc and the Motor Neurone Disease Association to test the feasibility and efficiency of an ambitious gene therapy programme to treat motor neurone disease (MND) and frontotemporal dementia (FTD) patients with underlying mutations in a causative gene known as C9orf72. If successful, this programme could lead groundbreaking research into future clinical trials for one of the most common forms of these incurable neurodegenerative diseases within the next few years. The research, at the University of Sheffield in collaboration with the Cell and Gene Therapy Catapult, is led by Dr Guillaume Hautbergue, head of the RNA Biology Laboratory, in collaboration with Professor Mimoun Azzouz and Professor Dame Pamela Shaw.
Two legends of Rugby League have been announced as patrons of the MND Association, in recognition of their efforts which have so far raised almost £3million.
Rob Burrow MBE, who is living with MND, and his former Leeds Rhinos team-mate and friend Kevin Sinfield OBE, have both contributed significantly to fundraising and awareness-raising of MND and the work of the MND Association. The announcement comes today, on 7/7, in recognition of Rob’s playing number and which has been hailed by Leeds Rhinos as #RobBurrowDay, with huge support from social media. It also marks the day on which Kevin takes on his latest challenge - a marathon around Saddleworth, in Greater Manchester, starting at 7am. He is hoping to boost the total raised, inspired by Rob, and hit the £3million mark. Kevin’s efforts in his 7 in 7 Challenge - which saw him complete seven marathons in as many days - led to the creation of a dedicated £1million fund to lead new research into potential treatments.Olympic fever will be hitting the UK soon as the postponed Tokyo games finally get underway next month.
With athletes from around the globe competing in various sports, one couple from Bristol are looking to emulate this in the name of motor neurone disease (MND). Charlotte Nichols and Stuart Bates have set themselves the enormous challenge of completing every event that will take place in this year's games while it is on. From archery to boxing, javelin to hockey the pair will try their luck at every sport this summer to raise money for the MND Association. Stuart had a close connection to this cause, having lost his brother Spencer to the disease.
A radio presenter has raised over £5,000 for the MND Association and paid tribute to her late father by cycling over 100 miles to visit all of his former football clubs.
Fern Balch, who works for both the BBC and talkSPORT, took on the mammoth cycle last month to mark ten years since her dad, Tim, lost his battle with motor neurone disease (MND). The ‘Tour de Tim’ featured twelve different teams across Dorset and Hampshire which he either managed or played for, all of which he had an impact on. Despite being fit and busy all his life Tim was diagnosed with MND in March 2010, with its fast progression taking its toll on both him and his family.
