I helped my motor neurone disease-stricken husband travel to Dignitas - it's what he wanted
A wife has shared how she nearly experienced a nervous breakdown helping her husband plan his assisted death in Switzerland, fearing the threat of prosecution under UK laws. (Source: the Mail online | Health)
Source: the Mail online | Health - February 29, 2024 Category: Consumer Health News Source Type: news
Broadcaster Jonathan Dimbleby slams UK's 'unbearable' and 'cruel' assisted dying ban as he poignantly tells how MND slowly killed his younger brother Nicholas who wanted to 'decide when I stop'
Broadcaster and royal biographer Jonathan Dimbleby has shared how motor neurone disease slowly killed his brother on the eve of the publication of landmark report on assisted dying. (Source: the Mail online | Health)
Source: the Mail online | Health - February 28, 2024 Category: Consumer Health News Source Type: news
I thought I had the coffee jitters - but they turned out to be motor neurone disease: Heartbreaking diagnosis of 47-year-old woman who says it 'was like getting hit by a train'
Nicola McFarlane, from Dunblane, Scotland, first noticed a tingling feeling throughout her body in 2022. (Source: the Mail online | Health)
Source: the Mail online | Health - January 19, 2024 Category: Consumer Health News Source Type: news
UK MND research institute sees promising trial results two months after launch
A UK Motor Neurone Disease Research Institute, established two months ago following a Sunday Express campaign, has already produced encouraging trial results in the quest for a cure. (Source: Daily Express - Health)
Source: Daily Express - Health - January 11, 2024 Category: Consumer Health News Source Type: news
They grew up as close as sisters - but one's life has been cruelly cut short by motor neurone disease at just 51. Now the BBC's CLARE RUNACRES asks... Was there nothing medicine could do to save my cousin?
CLARE RUNACRES: My cousin Harriet and I grew up together. She was about nine months older than me - the sensible to my flighty. In this picture, we're about seven and both wearing dresses. (Source: the Mail online | Health)
Source: the Mail online | Health - December 23, 2023 Category: Consumer Health News Source Type: news
Researcher loses disability lawsuit against major science funder
A jury in Maryland today delivered a unanimous verdict in favor of the Howard Hughes Medical Institute (HHMI), finding it did not discriminate against Vivian Cheung, a disabled biologist and physician, when it failed to renew her multimillion-dollar award in 2018. The closely watched case put a spotlight on obstacles faced by disabled scientists.
Lawyer Chong Park of Ropes & Gray was successful in persuading a jury of four women and two men that HHMI and its reviewers treated Cheung like any other scientist when she competed unsuccessfully to renew her investigator award for RNA studies. At the end of an 8-day tr...
Source: ScienceNOW - December 14, 2023 Category: Science Source Type: news
Health Secretary faces mounting pressure from campaginers to address drug shortages
Campaigners have called for Health Secretary Victoria Atkins to urgently tackle a dire shortage of the only licensed drug available to people living with motor neurone disease. (Source: Daily Express - Health)
Source: Daily Express - Health - December 10, 2023 Category: Consumer Health News Source Type: news
Hero Rob Burrow hails MND therapy ‘within 5 years’
EXCLUSIVE: Ruby league great Rob Burrow says it is vital to keep momentum going for research into a cure for Motor Neurone Disease that has been accelerated by Government funding. (Source: Daily Express - Health)
Source: Daily Express - Health - November 12, 2023 Category: Consumer Health News Source Type: news
Millions wept when rugby hardman Kevin Sinfield carried his old teammate Rob Burrow over a marathon finish line. Now, in an interview that'll break your heart all over again, the pair tell how Rob's motor neurone disease has strengthened their bond of love
When England rugby coach Kevin Sinfield carried his ex-teammate over the finishing line of the inaugural Rob Burrow Leeds Marathon, the tenderness of the gesture touched a nation's hearts. (Source: the Mail online | Health)
Source: the Mail online | Health - November 6, 2023 Category: Consumer Health News Source Type: news
Motor neurone disease: Sufferers describe wait to get diagnosed
Two MND sufferers tell the BBC how the debilitating neurological condition is hard to diagnose. (Source: BBC News | Health | UK Edition)
Source: BBC News | Health | UK Edition - October 27, 2023 Category: Consumer Health News Source Type: news
Majority of newborn babies with spinal muscular atrophy (SMA) treated with Roche ’s Evrysdi able to sit independently after 1 year of treatment
RAINBOWFISH study met its primary endpoint with 80% of babies sitting without support for at least five seconds after 1 year of Evrysdi treatment – without treatment these babies would never be able to sitAll babies were able to swallow and feed orally and none required permanent ventilationEvrysdi is the only non-invasive SMA therapy and is approved in over 100 countries with more than 11,000 patients treated globallyBasel, 04 October 2023 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented positive results from the primary analysis of the ongoing RAINBOWFISH study assessing the efficacy and safety of Evrysdi ® (risdi...
Source: Roche Media News - October 4, 2023 Category: Pharmaceuticals Source Type: news
Majority of newborn babies with spinal muscular atrophy (SMA) treated with Roche ’s Evrysdi able to sit independently after 1 year of treatment
RAINBOWFISH study met its primary endpoint with 80% of babies sitting without support for at least five seconds after 1 year of Evrysdi treatment – without treatment these babies would never be able to sitAll babies were able to swallow and feed orally and none required permanent ventilationEvrysdi is the only non-invasive SMA therapy and is approved in over 100 countries with more than 11,000 patients treated globallyBasel, 04 October 2023 - Roche (SIX: RO, ROG; OTCQX: RHHBY) today presented positive results from the primary analysis of the ongoing RAINBOWFISH study assessing the efficacy and safety of Evrysdi ® (risdi...
Source: Roche Investor Update - October 4, 2023 Category: Pharmaceuticals Source Type: news
European Commission approves Roche ’s Evrysdi for babies under two months old with spinal muscular atrophy (SMA)
Evrysdi available to treat people of all ages with SMA in the European Union, including babies from birth1Approval is based on interim data from ongoing RAINBOWFISH trial showing majority ofEvrysdi-treated babies were able to stand and walk within timeframes typical of healthy babies by 12 months ’ treatment2,3Evrysdi is the only non-invasive SMA therapy and is approved in 100 countries with more than 11,000 patients treated globallyBasel, 29 August 2023 - Roche (SIX: RO, ROG; OTCQX: RHHBY) announced today that the European Commission has approved the extension of the Evrysdi ® (risdiplam) European Union (EU) marketing ...
Source: Roche Media News - August 29, 2023 Category: Pharmaceuticals Source Type: news
European Commission approves Roche ’s Evrysdi for babies under two months old with spinal muscular atrophy (SMA)
Evrysdi available to treat people of all ages with SMA in the European Union, including babies from birth1Approval is based on interim data from ongoing RAINBOWFISH trial showing majority ofEvrysdi-treated babies were able to stand and walk within timeframes typical of healthy babies by 12 months ’ treatment2,3Evrysdi is the only non-invasive SMA therapy and is approved in 100 countries with more than 11,000 patients treated globallyBasel, 29 August 2023 - Roche (SIX: RO, ROG; OTCQX: RHHBY) announced today that the European Commission has approved the extension of the Evrysdi ® (risdiplam) European Union (EU) marketing ...
Source: Roche Investor Update - August 29, 2023 Category: Pharmaceuticals Source Type: news
CHMP recommends Roche ’s Evrysdi for babies under two months old with spinal muscular atrophy (SMA)
Positive recommendation is based on interim data from ongoing RAINBOWFISH trial which showed majority ofEvrysdi-treated babies were able to stand and walk within timeframes typical of healthy babies by 12 months ’ treatment1,2If approved by the European Commission,Evrysdi will be available to treat people of all ages with SMA in the European Union, including babies from birthEvrysdi is now approved in 100 countries with more than 8,500 patients treated globallyBasel, 21 July 2023 - Roche (SIX: RO, ROG; OTCQX: RHHBY) announced today that the EU Committee for Medicinal Products for Human Use (CHMP) has adopted a positive o...
Source: Roche Media News - July 21, 2023 Category: Pharmaceuticals Source Type: news
