@MNDScotland @JNewton_MND @suvankarpal are your patients using NIV prescribed a cough assist machine? My friend described her cough as 'silent' and 'weak' yet she was told repeatedly that she didn't need a cough assist.

@MNDScotland @JNewton_MND we regularly hear that patients in Scotland are being refused cough assist and/or suction. Is there no policy in place to ensure that patients receive this vital equipment? Without cough assist I would have died of infection in December 22.

If people with MND can't clear their lungs they will die of infection. In England, a cough assist machine is available this keeps serious lung issues at bay. I have just lost a Scots friend who was told repeatedly that she didn't need cough assist. @MNDScotland she couldn't cough

“I feel the need to carry a picture of myself. When I’m introduced to someone new, I’d like to show them. And tell them. I can explain that this is who I was. I can make them believe that it wasn’t always this way. I used to look different. I used to be different. I have proof.”

I’m really excited to bring this game to the public. Just over a year ago, Rob Burrow and I discussed the idea of a cross code rugby game. Sadly Rob won’t be here to see it come to fruition but he is at the forefront of why we are doing this and we are all proud to represent him

Excellent blog from @TriSam81 Some @MNDPatients choose #tracheostomy, others don't. Some have good quality of life but often have to fight for best care. Good news is Sam seems to have had proper discussion with medics. This should be available everywhere

Not good enough. Falls way short of what people battling mnd need and deserve. It’s embarrassing. Regardless of the results serious lessons need to be learned to make sure we don’t see a repeat of this disastrous situation.

The MNDA need to look at patients’ needs when it comes to #MIROCALS and give us some answers that patients and fundraisers deserve.

.@mndassoc Many in #MND community think our questions are REASONABLE N.b. for #Mirocals trial funded by OUR donations & taxes. Pls can you answer them? Can you help @ClaireRyanSport @IanByrneMP @APPGonMND @edslater @DHSCmedia @wesstreeting @BBCFergusWalsh @richardhorton1

#Mirocals Consortium including @mndassoc @KingsCollegeLon @SussexUni @QMUL @sheffielduni chose small Pharma #Iltoo AFTER completion of trial & top line results. Why not provider of trial drug #Proleukin? Do "commercials" take precedence over @MNDPatients needs? CLARITY please!

.@mndassoc #Mirocals Q of The Day 4/7. You don't seem to support access to readily available trial drug, #Proleukin. You show preference for new #Iltoo product. Please explain why to @united2endmnd @MNDPatients? TRANSPARENCY needed for your fundraisers/donors @ShaunLintern

.@mndassoc Why choose small pharma, AFTER trial ended, as commercial partner when far larger firm that supplied trial drug already exists? Check here for #Mirocals Question of The Day for 7 days. Just looking for answers to FAIR questions for a PUBLICLY & CHARITY funded trial

We appreciate some trial funders, scientists & others are trying hard to get answers. Please keep at it @MNDoddie5 @MNDScotland @SussexNeuro @QMneuroscience @neuroshef @KingsMND @WestonFdn @Telethon_France @ADFoundationUK @ARSLA75 - @MNDpatients @United2endMND need your support.

Let’s have a response from the MNDA ! Ps quickly 🤞

@mndassoc 7 FAIR questions on your Aug 12 #Mirocals statement https://t.co/pY7Z4pzTmK 1 Why choose small pharma when far larger firm with global rights to trial drug already exists? 2 Will you admit mistakes on commercial contracts? If not, an explanation would be welcome 1/3

✨A Million Thank Yous✨ Thank you Billy for putting your body on the line for me and for MND. People don't see what else you and G do for us but now they see what we know. You're a great man with a massive heart. Thank you to everyone who turned out to see the team off and

@mndassoc No acknowledgement or reply from @mndassoc

Not good enough @mndassoc when will you listen? Who will you listen to? Patients? Other major charities? The Burrow family? We are all saying the same thing. Not good enough.

Sam lost all movement due to the effects of motor neurone disease, but this didn’t stop him from completing the @LondonMarathon and raising over £260,000 for @StandAgainstMND 👏 He's now up for a JustGiving Award 🏆 Vote now ➡️ https://t.co/J1HSeTDEzJ | #GoCardless #JGAwards

Huge thanks for supporting @united2endmnd, Geoff. @mndassoc Why so long to ask questions of #Iltoo, partner chosen with YOUR help? Still no transparency on commercial deals for charity/public funded trial. Why no mention of Proleukin & access routes not requiring full regulation?