Epic challenge for MND cyclist who has defied the odds
Davy Zyw did not think he would still be alive four years after being told he has motor neurone disease. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - August 3, 2022 Category: Consumer Health News Source Type: news

‘It’s like the loss happened yesterday’: how long is too long to mourn?
Losing a loved one can be life-changing and, for some, debilitating. Could a diagnosis help, or are we medicalising a natural human emotion?For a while, Davina Rivers thought something wasn ’t right with her. “It will be seven years in November since my husband died, and I’m still grieving for him every day, I miss him every day, I wish he was here every day,” she says. She has suffered from depression before, and she thought her intense grief had settled, like a grey mist, int o a kind of depression. Rivers and her husband, Eric, married in 1998, and they have three daughters; he died in 2015 at the age of 49. She...
Source: Guardian Unlimited Science - June 16, 2022 Category: Science Authors: Emine Saner Tags: Death and dying Mental health Counselling and therapy Society Psychology & wellbeing Source Type: news

New lifeline for patients as NHS gets £340m fund to provide faster access to latest drugs 
The Innovative Medicines Fund (IMF) offers hope to people with rare illnesses and conditions for which there are currently few or no drugs, such as Alzheimer's and Motor Neurone Disease. (Source: the Mail online | Health)
Source: the Mail online | Health - June 7, 2022 Category: Consumer Health News Source Type: news

FDA approves Roche ’s Evrysdi for use in babies under two months with spinal muscular atrophy (SMA)
Approval based on interim RAINBOWFISH data which show pre-symptomatic babies treated withEvrysdi for at least one year were able to sit, stand and walkPrescribing information updated with FIREFISH data showing the majority of symptomatic babies treated withEvrysdi for at least two years could sit for at least five secondsEvrysdi has proven efficacy in babies, children and adults with more than 5,000 patients treated to dateBasel, 31 May 2022 – Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced that the U.S. Food and Drug Administration (FDA) has approved a label extension for Evrysdi® (risdiplam) to include babies under...
Source: Roche Media News - May 31, 2022 Category: Pharmaceuticals Source Type: news

FDA approves Roche ’s Evrysdi for use in babies under two months with spinal muscular atrophy (SMA)
Approval based on interim RAINBOWFISH data which show pre-symptomatic babies treated withEvrysdi for at least one year were able to sit, stand and walkPrescribing information updated with FIREFISH data showing the majority of symptomatic babies treated withEvrysdi for at least two years could sit for at least five secondsEvrysdi has proven efficacy in babies, children and adults with more than 5,000 patients treated to dateBasel, 31 May 2022 – Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced that the U.S. Food and Drug Administration (FDA) has approved a label extension for Evrysdi® (risdiplam) to include babies under...
Source: Roche Investor Update - May 31, 2022 Category: Pharmaceuticals Source Type: news

Campaigners blast delays in £50m MND funding
ACTIVISTS have expressed their 'concern' at the Government's reluctance to cut red tape and allow easier access to £50million of funding to help find a cure for motor neurone disease. (Source: Daily Express - Health)
Source: Daily Express - Health - May 1, 2022 Category: Consumer Health News Source Type: news

New three-year data for Roche ’s Evrysdi (risdiplam) show long-term improvements in survival and motor milestones in babies with Type 1 spinal muscular atrophy (SMA)
91% of infants treated withEvrysdi in the FIREFISH study were still alive at three yearsInfants treated withEvrysdi maintained or continued to improve in measures of motor function, including their ability to sit without support for 5 and 30 secondsEvrysdi has proven efficacy in infants and adults, with over 5,000 patients treated to dateBasel, 29 April 2022 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced new three-year data from the FIREFISH study, including one-year data from the open label extension, reinforcing the long-term efficacy and safety of Evrysdi ® (risdiplam) in infants with symptomatic Type 1 spinal mu...
Source: Roche Media News - April 29, 2022 Category: Pharmaceuticals Source Type: news

New three-year data for Roche ’s Evrysdi (risdiplam) show long-term improvements in survival and motor milestones in babies with Type 1 spinal muscular atrophy (SMA)
91% of infants treated withEvrysdi in the FIREFISH study were still alive at three yearsInfants treated withEvrysdi maintained or continued to improve in measures of motor function, including their ability to sit without support for 5 and 30 secondsEvrysdi has proven efficacy in infants and adults, with over 5,000 patients treated to dateBasel, 29 April 2022 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today announced new three-year data from the FIREFISH study, including one-year data from the open label extension, reinforcing the long-term efficacy and safety of Evrysdi ® (risdiplam) in infants with symptomatic Type 1 spinal mu...
Source: Roche Investor Update - April 29, 2022 Category: Pharmaceuticals Source Type: news

MND: 'It's like a hand grenade going off in your body'
A man living with motor neurone disease says he tries to stay upbeat despite the "cruel" illness. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - April 15, 2022 Category: Consumer Health News Source Type: news

Sports and trauma as risk factors for motor neurone disease: New Zealand case-control study - Chen GX, Douwes J, van den Berg LH, Glass B, McLean D, 't Mannetje AM.
OBJECTIVES: To assess whether sports, physical trauma and emotional trauma are associated with motor neurone disease (MND) in a New Zealand case-control study (2013-2016). METHODS: In total, 321  MND cases and 605 population controls were interview... (Source: SafetyLit)
Source: SafetyLit - April 4, 2022 Category: International Medicine & Public Health Tags: Ergonomics, Human Factors, Anthropometrics, Physiology Source Type: news

Ronnie Corbett: Star's secret motor neurone diagnosis left him needing '24-hour care'
RONNIE CORBETT sadly passed away aged 85 back in March 2016. Just after his death, Corbett's devoted wife revealed more about the entertainer's ill health and his amyotrophic lateral sclerosis diagnosis that came as a complete shock to them both. (Source: Daily Express - Health)
Source: Daily Express - Health - April 2, 2022 Category: Consumer Health News Source Type: news

Roche to present data across broad and impactful neuroscience portfolio at 2022 AAN Annual Meeting
First data showing OCREVUS treatment effect on disability progression in non-active secondary progressive multiple sclerosis and further data in primary progressive MS will be presentedEvrysdi data continue to demonstrate long-term efficacy and safety in a broad population of people with spinal muscular atrophyLonger-term efficacy and safety forEnspryng inneuromyelitisoptica spectrum disorder reinforce previously seen resultsAdditional data across neurological disorders, including Alzheimer ’s disease, help advance the scientific understanding of these conditions and the potential impact of early treatmentBasel, 25 March...
Source: Roche Investor Update - March 25, 2022 Category: Pharmaceuticals Source Type: news

Roche to present data across broad and impactful neuroscience portfolio at 2022 AAN Annual Meeting
First data showing OCREVUS treatment effect on disability progression in non-active secondary progressive multiple sclerosis and further data in primary progressive MS will be presentedEvrysdi data continue to demonstrate long-term efficacy and safety in a broad population of people with spinal muscular atrophyLonger-term efficacy and safety forEnspryng inneuromyelitisoptica spectrum disorder reinforce previously seen resultsAdditional data across neurological disorders, including Alzheimer ’s disease, help advance the scientific understanding of these conditions and the potential impact of early treatmentBasel, 25 March...
Source: Roche Media News - March 25, 2022 Category: Pharmaceuticals Source Type: news

‘Emotional moment’: locked-in patient communicates with family via implant
New technology allows patients to communicate but at slow paceA completely locked-in patient is able to type out words and short sentences to his family, including what he would like to eat, after being implanted with a device that enables him to control a keyboard with his mind.The findings, published in Nature Communications,overturn previous assumptions about the communicative abilities of people who have lost all voluntary muscle control, including movement of the eyes or mouth, as well as giving a unique insight into what it ’s like to be in a “locked in” state.Continue reading... (Source: Guardian Unlimited Science)
Source: Guardian Unlimited Science - March 22, 2022 Category: Science Authors: Linda Geddes Tags: Science Health World news Motor neurone disease Source Type: news

New Genetic Test Finds Hidden Neurological Diseases New Genetic Test Finds Hidden Neurological Diseases
Difficult-to-diagnose hereditary muscular and motor neuron diseases can now be detected using technology about the size of a stapler.WebMD Health News (Source: Medscape Neurology and Neurosurgery Headlines)
Source: Medscape Neurology and Neurosurgery Headlines - March 18, 2022 Category: Neurology Tags: Neurology & Neurosurgery News Source Type: news