Antiepileptic drug reduces motor neuron excitability in ALS
(Massachusetts General Hospital) The antiepileptic drug ezogabine reduced pathologic excitability of cortical and spinal motor neuron cells that are early signs of clinical dysfunction in people with amyotrophic lateral sclerosis (ALS), according to a study conducted by the Neurological Clinical Research Institute of Massachusetts General Hospital (MGH). In addition, the multi-site study involves the first clinical investigation of ALS using a drug identified through an induced pluripotent stem cell model. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - December 10, 2020 Category: International Medicine & Public Health Source Type: news

Motor Neurone Disease: Scientists find mutation that could end hell of disease
SCIENTISTS have identified a new genetic mutation that increases risk of motor neurone disease, raising hopes of better targeted treatments. (Source: Daily Express - Health)
Source: Daily Express - Health - December 2, 2020 Category: Consumer Health News Source Type: news

Trinity researchers discover how the brain 're-wires' after disease
(Trinity College Dublin) Trinity College researchers are studying how the brain re-wires itself in neurological disease. The team is building treatments for today's more common global conditions like Motor Neurone Disease (MND/ALS) and Spinal Muscular Atrophy and their findings could impact rehabilitation for patients, the discovery of effective drugs and quantifying the potential efficacy of new therapies. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - November 24, 2020 Category: International Medicine & Public Health Source Type: news

ALS Ice Bucket Challenge Co-Founder Pat Quinn Dead At 37
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Source: WBZ-TV - Breaking News, Weather and Sports for Boston, Worcester and New Hampshire - November 23, 2020 Category: Consumer Health News Authors: CBS Boston Tags: Boston News Syndicated CBSN Boston ALS Ice Bucket Challenge Pat Quinn Pete Frates Source Type: news

Curing the incurable: teaching an old drug new tricks to fight ovarian cancer
The winning essay in the Max Perutz science writing award 2020 was written by Sarah Taylor from the MRC Institute of Genetics and Molecular Medicine at the University of EdinburghIn May, PhD students who are funded by the Medical Research Council (MRC) were invited to enter theMax Perutzscience writing award 2020 and to tell the general public “why your research matters”. From the many entries received, the 10that made the shortlist covered diverse topics, including motor neurone disease, self-harm, babies ’ experiences of pain, and bone loss resulting from space travel.The essays were judged by theObserv...
Source: Guardian Unlimited Science - October 18, 2020 Category: Science Authors: The Observer Tags: Science Medical research Cancer research Source Type: news

Occupational exposure to electric shocks and extremely low-frequency magnetic fields and motor neurone disease - Chen GX, Mannetje A, Douwes J, Berg LH, Pearce N, Kromhout H, Glass B, Brewer N, McLean DJ.
In a New Zealand population-based case-control study we assessed associations with occupational exposure to electric shocks, extremely low-frequency magnetic fields (ELF-MF) and motor neurone disease using job-exposure matrices to assess exposure. Particip... (Source: SafetyLit)
Source: SafetyLit - October 12, 2020 Category: International Medicine & Public Health Tags: Burns, Electricity, Explosions, Fire, Scalds Source Type: news

Evidence of Alzheimer's, Parkinson's & MND in brains of young people exposed to dirty air
(Lancaster University) After examining the brainstems of 186 young Mexico City residents aged between 11 months and 27 years of age, researchers, including Professor Barbara Maher from Lancaster University, found markers not only of Alzheimer's disease, but also of Parkinson's and of motor neurone disease (MND) too.These markers of disease were coupled with the presence of tiny, distinctive nanoparticles within the brainstem - their appearance and composition indicating they were likely to come from vehicle pollution. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - October 6, 2020 Category: International Medicine & Public Health Source Type: news

Roche presents new 2-year data for Evrysdi (risdiplam) in infants with Type 1 spinal muscular atrophy (SMA)
Basel, 28 September 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced new 2-year data from Part 1 of the pivotal FIREFISH study of Evrysdi ™ (risdiplam) in infants aged 2-7 months with symptomatic Type 1 spinal muscular atrophy (SMA). The 2-year results in infants treated with the therapeutic dose of Evrysdi (17/21) showed that they continued to improve and achieve motor milestones. This exploratory analysis showed that an estimated 88% of infants were alive and required no permanent ventilation at two years. In addition, at two years, 59% (10/17 vs. 7/17 at 1-year) of infants were able to sit without support...
Source: Roche Investor Update - September 28, 2020 Category: Pharmaceuticals Source Type: news

Roche presents new 2-year data for Evrysdi (risdiplam) in infants with Type 1 spinal muscular atrophy (SMA)
Basel, 28 September 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced new 2-year data from Part 1 of the pivotal FIREFISH study of Evrysdi ™ (risdiplam) in infants aged 2-7 months with symptomatic Type 1 spinal muscular atrophy (SMA). The 2-year results in infants treated with the therapeutic dose of Evrysdi (17/21) showed that they continued to improve and achieve motor milestones. This exploratory analysis showed that an estimated 88% of infants were alive and required no permanent ventilation at two years. In addition, at two years, 59% (10/17 vs. 7/17 at 1-year) of infants were able to sit without support...
Source: Roche Media News - September 28, 2020 Category: Pharmaceuticals Source Type: news

Scientists identify promising new ALS drug candidates
(University of Liverpool) Scientists have taken a significant step forward in the search to find effective new drug candidates for the treatment of Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - September 1, 2020 Category: International Medicine & Public Health Source Type: news

Peter: The Human Cyborg: Scientist diagnosed with motor neurone disease opens up about journey
Peter Scott-Morgan, 62, from Devon, who has motor neurone disease, appears in Channel 4's documentary Peter: The Human Cyborg tonight, as he uses technology to transform his life. (Source: the Mail online | Health)
Source: the Mail online | Health - August 26, 2020 Category: Consumer Health News Source Type: news

Coronavirus pandemic halts life-saving UK cancer and heart disease research
Thousands of clinical trials have closed permanently or been suspended – and may never have the cash to restartCoronavirus – latest updatesSee all our coronavirus coverageMore than 1,500 clinical trials of new drugs and treatments for cancers, heart disease and other serious illnesses have been permanently closed down in Britain in the wake of the Covid-19 pandemic. In addition, a further 9,000 have been suspended andmost will need major cash injections if they are to be reactivated.The figures highlight the catastrophic effect that Covid-19 has had on UK medical research, which has suffered a devastating blow ...
Source: Guardian Unlimited Science - August 22, 2020 Category: Science Authors: Robin McKie Science editor Tags: Medical research Cancer research Heart disease Motor neurone disease Coronavirus outbreak Infectious diseases Science UK news Health Society Source Type: news

Blood Test Identifies People With ALS Blood Test Identifies People With ALS
A panel of eight micro RNA can identify patients with amyotrophic lateral sclerosis/motor neuron disease, researchers report.Reuters Health Information (Source: Medscape Pathology Headlines)
Source: Medscape Pathology Headlines - July 28, 2020 Category: Pathology Tags: Neurology & Neurosurgery News Source Type: news

HEALTH NOTES: Trial for motor neurone drug and why cycling could risk men's sex life
Bike sales have soared during lockdown. But men may want to think twice before donning Lycra and getting in the saddle, as research suggests it could put them at an increased risk of impotence. (Source: the Mail online | Health)
Source: the Mail online | Health - July 18, 2020 Category: Consumer Health News Source Type: news

Scientists link bowel inflammation to higher risk of dementia
Study is latest to find high degree of correlation between gut health and mental healthPeople living with inflammatory bowel disease (IBD) have more than twice the risk of developing dementia, researchers have revealed in the latest study to link gut health to neurological diseases.A growing body of research suggests changes in the gastrointestinal tract may affect the brain through two-way communication known as the gut-brain axis.Continue reading... (Source: Guardian Unlimited Science)
Source: Guardian Unlimited Science - June 24, 2020 Category: Science Authors: Nicola Davis Tags: Dementia Alzheimer's Health Parkinson's disease Mental health Motor neurone disease Society Digestive disorders Source Type: news

Roche announces 2-year risdiplam data from SUNFISH and new data from JEWELFISH in infants, children and adults with spinal muscular atrophy (SMA)
Basel, 12 June 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented two-year data from Part 1 of its pivotal SUNFISH trial in people aged 2-25 years with Type 2 or 3 spinal muscular atrophy (SMA) at the virtual Cure SMA Annual Conference, 8-12 June, 2020. The results of an exploratory efficacy analysis show risdiplam significantly improved motor function after 24 months of treatment compared to natural history data. In addition, preliminary 12 month data from JEWELFISH, a trial in people with all types of SMA aged 6 months to 60 years previously treated with other SMA therapies, showed that treatment with risdiplam le...
Source: Roche Media News - June 12, 2020 Category: Pharmaceuticals Source Type: news

Roche announces 2-year risdiplam data from SUNFISH and new data from JEWELFISH in infants, children and adults with spinal muscular atrophy (SMA)
Basel, 12 June 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented two-year data from Part 1 of its pivotal SUNFISH trial in people aged 2-25 years with Type 2 or 3 spinal muscular atrophy (SMA) at the virtual Cure SMA Annual Conference, 8-12 June, 2020. The results of an exploratory efficacy analysis show risdiplam significantly improved motor function after 24 months of treatment compared to natural history data. In addition, preliminary 12 month data from JEWELFISH, a trial in people with all types of SMA aged 6 months to 60 years previously treated with other SMA therapies, showed that treatment with risdiplam le...
Source: Roche Investor Update - June 12, 2020 Category: Pharmaceuticals Source Type: news

Roche ’s risdiplam shows significant improvement in survival and motor milestones in infants with Type 1 spinal muscular atrophy (SMA)
Basel, 28 April 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented 1-year data from FIREFISH Part 2, a pivotal global study evaluating risdiplam in infants aged 1 – 7 months old with symptomatic Type 1 spinal muscular atrophy (SMA). The study met its primary endpoint with 29% of infants (12/41; p
Source: Roche Investor Update - April 28, 2020 Category: Pharmaceuticals Source Type: news

Roche ’s risdiplam shows significant improvement in survival and motor milestones in infants with Type 1 spinal muscular atrophy (SMA)
Basel, 28 April 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented 1-year data from FIREFISH Part 2, a pivotal global study evaluating risdiplam in infants aged 1 – 7 months old with symptomatic Type 1 spinal muscular atrophy (SMA). The study met its primary endpoint with 29% of infants (12/41; p
Source: Roche Media News - April 28, 2020 Category: Pharmaceuticals Source Type: news

'I feel like I don't count,' says man with MND
The government's advice on shielding is failing people with motor neurone disease, according to a charity. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - April 26, 2020 Category: Consumer Health News Source Type: news

Coronavirus: Lockdown, a baby and MND - but I'm feeling great
Lucy Lintott is the youngest person in Scotland with motor neurone disease - and is now facing a mountain of new challenges. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - April 9, 2020 Category: Consumer Health News Source Type: news

Roche provides regulatory update on risdiplam for the treatment of spinal muscular atrophy (SMA)
Basel, 07 April 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY), today announced that the U.S. Food and Drug Administration (FDA) has extended the Prescription Drug User Fee Act (PDUFA) date for its review of the New Drug Application (NDA) of risdiplam with a decision expected by August 24, 2020. The extension is a result of the recent submission of additional data by Roche, including data from the pivotal SUNFISH Part 2 study, in close collaboration with the FDA. These data were recently presented at the 2nd International Scientific and Clinical Congress on Spinal Muscular Atrophy. In November 2019, the FDA granted Priority Rev...
Source: Roche Investor Update - April 7, 2020 Category: Pharmaceuticals Source Type: news

Roche provides regulatory update on risdiplam for the treatment of spinal muscular atrophy (SMA)
Basel, 07 April 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY), today announced that the U.S. Food and Drug Administration (FDA) has extended the Prescription Drug User Fee Act (PDUFA) date for its review of the New Drug Application (NDA) of risdiplam with a decision expected by August 24, 2020. The extension is a result of the recent submission of additional data by Roche, including data from the pivotal SUNFISH Part 2 study, in close collaboration with the FDA. These data were recently presented at the 2nd International Scientific and Clinical Congress on Spinal Muscular Atrophy. In November 2019, the FDA granted Priority Rev...
Source: Roche Media News - April 7, 2020 Category: Pharmaceuticals Source Type: news

GP surgery sends out letter asking terminally ill patients to sign DNR notices
Llynfi Surgery, in Maesteg, South Wales, sent the letter to patients with serious health conditions such as incurable cancer, motor neurone disease, and untreatable heart and lung conditions. (Source: the Mail online | Health)
Source: the Mail online | Health - April 1, 2020 Category: Consumer Health News Source Type: news

New brain reading technology could help the development of brainwave-controlled devices
(The Francis Crick Institute) A new method to accurately record brain activity at scale has been developed by researchers at the Crick, Stanford University and UCL. The technique could lead to new medical devices to help amputees, people with paralysis or people with neurological conditions such as motor neurone disease. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - March 20, 2020 Category: International Medicine & Public Health Source Type: news

Coronavirus UK: Death toll hits 137, youngest fatality is 47
Only a handful of coronavirus victims have already been identified, including the UK's youngest - a 45-year-old with motor neurone disease from Kettering in Northamptonshire. (Source: the Mail online | Health)
Source: the Mail online | Health - March 19, 2020 Category: Consumer Health News Source Type: news

Coronavirus: Craig Ruston 'youngest UK death'
Craig Ruston, who had motor neurone disease, died on Monday morning in Kettering. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - March 18, 2020 Category: Consumer Health News Source Type: news

Experts discover toolkit to repair DNA breaks linked to aging, cancer and MND
(University of Sheffield) A new 'toolkit' to repair damaged DNA that can lead to aging, cancer and motor neurone disease (MND) has been discovered by scientists at the universities of Sheffield and Oxford. (Source: EurekAlert! - Biology)
Source: EurekAlert! - Biology - March 9, 2020 Category: Biology Source Type: news

Initial protective role of nervous system's 'star-shaped cells' in sporadic motor neuron disease uncovered
(The Francis Crick Institute) Support cells in the nervous system help protect motor neurons in the early-stages of sporadic motor neuron disease, according to new research from the Crick and UCL. (Source: EurekAlert! - Medicine and Health)
Source: EurekAlert! - Medicine and Health - February 10, 2020 Category: International Medicine & Public Health Source Type: news

Roche ’s Risdiplam meets primary endpoint in pivotal FIREFISH trial in infants with type 1 spinal muscular atrophy
             Basel, 23 January 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced positive topline results from the pivotal Part 2 of the FIREFISH study, evaluating risdiplam in infants aged 1-7 months with Type 1 spinal muscular atrophy (SMA). The primary outcome measure of the study was the proportion of infants sitting without support for at least five seconds at 12-months of treatment, assessed by the Gross Motor Scale of the Bayley Scales of Infant and Toddler Development Third Edition (BSID-III). Safety for risdiplam in the FIREFISH study was con...
Source: Roche Media News - January 23, 2020 Category: Pharmaceuticals Source Type: news

Roche ’s Risdiplam meets primary endpoint in pivotal FIREFISH trial in infants with type 1 spinal muscular atrophy
             Basel, 23 January 2020 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced positive topline results from the pivotal Part 2 of the FIREFISH study, evaluating risdiplam in infants aged 1-7 months with Type 1 spinal muscular atrophy (SMA). The primary outcome measure of the study was the proportion of infants sitting without support for at least five seconds at 12-months of treatment, assessed by the Gross Motor Scale of the Bayley Scales of Infant and Toddler Development Third Edition (BSID-III). Safety for risdiplam in the FIREFISH study was con...
Source: Roche Investor Update - January 23, 2020 Category: Pharmaceuticals Source Type: news

MND: The search for new treatments
A major study will assess if new - and existing - drugs can help people with motor neurone disease. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - January 15, 2020 Category: Consumer Health News Source Type: news

Urgent research needed into contact sports link motor neurone disease after Rob Burrow
Leading doctors and scientists told MailOnline they were 'frustrated' the cause of the cruel condition had not yet been pinpointed. English rugby stalwart Rob Burrow was diagnosed this week. (Source: the Mail online | Health)
Source: the Mail online | Health - December 20, 2019 Category: Consumer Health News Source Type: news

Motor neurone disease 'linked to cholesterol'
UK scientists say their discovery could help in the search for new treatments. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - December 18, 2019 Category: Consumer Health News Source Type: news

FDA grants priority review to Roche ’s risdiplam for spinal muscular atrophy
Roche (SIX: RO, ROG; OTCQX: RHHBY) announced that the U.S. Food and Drug Administration (FDA) has accepted the New Drug Application (NDA) and granted Priority Review for risdiplam, an investigational survival motor neuron-2 (SMN-2) splicing modifier for SMA. Risdiplam is designed to increase and sustain SMN protein levels both throughout the central nervous system and peripheral tissues of the body. (Source: World Pharma News)
Source: World Pharma News - November 27, 2019 Category: Pharmaceuticals Tags: Featured Roche Business and Industry Source Type: news

FDA grants priority review to Roche ’s risdiplam for spinal muscular atrophy
Roche today announced that the U.S. Food and Drug Administration (FDA) has accepted the New Drug Application (NDA) and granted Priority Review for risdiplam, an investigational survival motor neuron-2 (SMN-2) splicing modifier for SMA. (Source: Roche Investor Update)
Source: Roche Investor Update - November 25, 2019 Category: Pharmaceuticals Source Type: news

FDA grants priority review to Roche ’s risdiplam for spinal muscular atrophy
Roche today announced that the U.S. Food and Drug Administration (FDA) has accepted the New Drug Application (NDA) and granted Priority Review for risdiplam, an investigational survival motor neuron-2 (SMN-2) splicing modifier for SMA. (Source: Roche Media News)
Source: Roche Media News - November 25, 2019 Category: Pharmaceuticals Source Type: news

AI project to preserve people's voices in effort to tackle speech loss
Clinic hopes to help those at risk of losing ability to speak maintain sense of identityA pioneering centre aimed at preserving and re-creating people ’s voices using artificial intelligence has opened in the US, with researchers hoping it will change the lives of people who face losing their ability to speak.Researchers say the venture – a joint effort between Northeastern University in Boston and the company VocaliD – could play an important role in maintaining a sense of identity among those with conditions ranging from throat cancer to motor neurone disease, by offering them the chance to sound like t...
Source: Guardian Unlimited Science - November 9, 2019 Category: Science Authors: Nicola Davis Tags: Artificial intelligence (AI) Computing Consciousness Human biology Neuroscience Psychology Technology World news Source Type: news

Ex-Liverpool player Stephen Darby on fight with 'brutal disease'
Stephen Darby, who is married to England women's captain Steph Houghton, has motor neurone disease. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - October 27, 2019 Category: Consumer Health News Source Type: news

RightCare Progressive Neurological Conditions Toolkit
This toolkit will support systems to understand the priorities in care for people living with various progressive neurological conditions including multiple sclerosis (MS), motor neurone disease (MND), Parkinson's and the atypical Parkinsonism's of multiple system atrophy (MSA), progressive supranuclear palsy (PSP) and coticobasal degeneration (CBD). It provides the opportunity to assess and benchmark current systems to find opportunities for improvement. (Source: Current Awareness Service for Health (CASH))
Source: Current Awareness Service for Health (CASH) - October 17, 2019 Category: Consumer Health News Source Type: news

Is This a Fasciculation?
Discussion Benign fasciculations are very common and occur in up to 70% of the general population. They occur at different points in people’s lives. They can be brought out by stress, poor sleep hygiene and caffeine. Caffeine has numerous uses especially for regulating sleep and attention. However too much can cause restlessness, jitteriness and sleep deprivation too. The recommended amount of caffeine for a teenager is
Source: PediatricEducation.org - September 16, 2019 Category: Pediatrics Authors: Pediatric Education Tags: Uncategorized Source Type: news

MRC backs MSD and Francis Crick Institute collaboration to tackle motor neurone disease
Scientists at global biopharmaceutical company MSD and the Francis Crick Institute have started a unique new collaboration to understand the causes of motor neurone disease and identify potential targets for future treatments, co-funded by the Medical Research Council and MSD. (Source: Medical Research Council General News)
Source: Medical Research Council General News - August 29, 2019 Category: Research Source Type: news

MSD backs MSD and Francis Crick Institute collaboration to tackle motor neurone disease
Scientists at global biopharmaceutical company MSD and the Francis Crick Institute have started a unique new collaboration to understand the causes of motor neurone disease and identify potential targets for future treatments, co-funded by the Medical Research Council and MSD. (Source: Medical Research Council General News)
Source: Medical Research Council General News - August 27, 2019 Category: Research Source Type: news

Search for motor neurone disease cure gathers pace
Crick Institute links up with drug company Merck to tackle degenerative brain disorder (Source: FT.com - Drugs and Healthcare)
Source: FT.com - Drugs and Healthcare - August 20, 2019 Category: Pharmaceuticals Source Type: news

CCGs offered help tackling neurological conditions
Better care for Parkinson ’s, MS and motor neurone disease Related items fromOnMedica 'Revived' dead pig brains offer new research hopes NICE issues guidelines on neurological conditions GPs have duty to protect abused vulnerable adults NICE sets care standards for spasticity GPs must greatly improve deaf awareness (Source: OnMedica Latest News)
Source: OnMedica Latest News - August 15, 2019 Category: UK Health Source Type: news

The son giving the gift of his voice to his father
Bob Alderman, 70, lost his voice to motor neurone disease - until his son stepped in to help. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - August 13, 2019 Category: Consumer Health News Source Type: news

Do we have a right to know if we could have the Huntington ’s disease gene?
Not telling your child that this hereditary condition is in the family can be devastating later onOn a lazy Sunday morning in May last year, Isobel Lloyd was at her boyfriend ’s house, having coffee with his mum. The conversation had worked around to Lloyd’s grandma – her mother’s mother – who’d died in her 50s, when Lloyd was very young. Lloyd’s only memories of her had been hospice visits where her grandma lay bedbound, unable to talk or swallow, with no control over how her body moved. Lloyd had forgotten the name of her grandma’s disease, hadn’t thought about it in ...
Source: Guardian Unlimited Science - August 10, 2019 Category: Science Authors: Anna Moore Tags: Huntington's disease Family Health Life and style Psychology Science & wellbeing Society Source Type: news

Charlotte Hawkins: We won't stand back as our dying loved ones are treated ‘shamefully’
MOTOR NEURONE disease gradually stops messages from the motor neurones reaching the muscles. Up to 5,000 adults in the UK will have it at any one time. For about half of patients life expectancy is three years from first symptoms. (Source: Daily Express - Health)
Source: Daily Express - Health - August 4, 2019 Category: Consumer Health News Source Type: news

Super-fit Simon was struck by a fatal brain disease at just 52
Simon Brennan, from North London, was diagnosed with motor neurone disease, last year. This is his incredible story. (Source: the Mail online | Health)
Source: the Mail online | Health - July 29, 2019 Category: Consumer Health News Source Type: news