MummywithMND @MummywithM Twitter profile

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MummywithMND

@MummywithM

9 months

Today I made some videos for my daughter to watch when I am gone. She's six. Haven't been able to face doing it for a long time, but my voice is fading so it's now or never. Been tearful since because it's been a day of realisation. I don't want to die. Time is running out. #MND

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MummywithMND

@MummywithM

3 years

1244 days ago, I was told that I may not see my little girl start school. I made it. We want increased #GOV funding so that people like me, living with #MND , can see their children grow up. She needs me. @sajidjavid @Helen_Whately @RishiSunak #united2endmnd

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MummywithMND

@MummywithM

8 months

This is what mothering with end stage #MND looks like. I do everything possible to enjoy life with my daughter despite how terribly hard it is. We had an incredible time @wbtourlondon . Some days I still feel like it might be ok. I so want to live for her.

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MummywithMND

@MummywithM

4 years

It's seems MND isn't the only thing that @Rob7Burrow @MNDoddie5 and me have in common. Here's me in 1994 aged 13, playing rugby for the boy's school team. I was smashing the boundaries back then and I'm doing it now with MND. #MND #attackmnd #solidarity #strongertogether

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MummywithMND

@MummywithM

2 years

Keeping #MND in the spotlight. I will be talking to @AmosAnnabel in the morning and then @BBCLookEast later in the day. #united2endmnd @MNDoddie5 @mndassoc @MNDScotland

MND: Northampton mum determined to beat the odds

Emma Moss is determined to beat the odds, having been diagnosed with a fatal disease three years ago.

www.bbc.co.uk

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MummywithMND

@MummywithM

3 years

What a high! Excited to be working with such an incredible team who are #United2EndMND fabulous support in Westminster and we can really feel the momentum building. A huge thank you to everyone involved. @MNDoddie5 @MNDScotland @mndassoc the time is NOW!

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MummywithMND

@MummywithM

9 months

People with #MND are depicted as dignified heroes who can bear the horrors of the disease - explains the distinct lack of urgency to get #Proleukin to patients. Nothing dignified about being spoonfed and having your arse wiped at 42. Trust me. I will not accept death @mndassoc

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MummywithMND

@MummywithM

3 years

Vaccine calculator predicted that I would be fully vaccinated by Feb21 and that felt almost tolerable. It now says July. It's unbearable. I want my life back. Give terminally ill people the vaccine now. @MattHancock @mndassoc @piersmorgan @MrsCharlieJones #Covid -19 #CovidVaccine

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MummywithMND

@MummywithM

9 months

People with MND demand and deserve treatment. #Proleukin reduced death rate by 40%, it is cheap, safe, it works and I want it. Time for real action @mndassoc @MNDoddie5 @MNDScotland . I don't want to die.

Proleukin Statement

Important Statement from Patients United 2 End MND Emma Moss, wife and mother with her daughter Veryan ”Proleukin will give me more time to be her Mother. More time to guide, nurture and love…

united2endmnd.org

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MummywithMND

@MummywithM

9 months

#MND patients have been brave and stoic for long enough. Hundreds of thousands have accepted that death is inevitable and nothing can be done because that is the message given at diagnosis. No more. Time for change. Time for treatment #proleukin #mirocals @mndassoc

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MummywithMND

@MummywithM

3 years

I've lost a 14 year teaching career to MND. In 2018 I was a fully functioning teacher and now I need 24hr care + a machine breathes for me. Will teachers stand with me? #teachertwitter #teacher5oclockclub #teaching #teacherspotlight Please sign and RT.

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MummywithMND

@MummywithM

4 years

⚠️MND is NOT rare ⚠️YOUR lifetime risk of developing MND is 1 in 300 ⚠️MND is an underfunded, currently incurable, terminal, neurological disease ⚠️MND kills 33% in 1 year ⚠️MND kills 50% in 2 years Look what it has done to me. #attackmnd #MNDawarenessday

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MummywithMND

@MummywithM

2 years

So excited to have launched the 'Sponsored Sunflower 🌻 ' competition at my daughter's school yesterday in aid of the @mndassoc . Children got to wear what makes them happy and eat a lot of cake for a great cause #united2endmnd #MND #makememories

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MummywithMND

@MummywithM

3 years

#MND is having a very good go at destroying my life, but I will never, ever give up. We are #United2EndMND @mndassoc @MNDoddie5 @MNDScotland @DarbyRimmerMND @clarebalding @HesterDressage @foxpitteventing 🐴 please sign the petition and RT.

Horse & Hound

@horseandhound

3 years

‘I still ride in my dreams’: rider whose life has been destroyed by motor neurone disease calls for more research funding

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MummywithMND

@MummywithM

3 years

#MND has devestated my life. We must be #United2EndMND . I want to raise my daughter. I want to live. Without increased ££ from #UKGovernment for targeted #MND research we will not succeed. @Rob7Burrow @MNDoddie5 @Helen_Whately @MattHancock

MND Campaigns

@mndcampaigns

3 years

Soon after @MummywithM Emma's daughter was born, she was diagnosed w/ #MND "Without ever having the opportunity to be the mother I wanted to be, my body began to fail” ⚠️Finding treatments & a cure needs⬆️Govt funding. Ask your MP to join #United2EndMND 👇🏼

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MummywithMND

@MummywithM

1 year

I have more in common with @Rob7Burrow than #MND . As a teen I played #RugbyLeague at Odsal + Headingly and fought for my position on a boys' team. Now, like Rob, I fight for my life. Now, like Rob, I want #proleukin which will extend my life @mndassoc @burrow_geoff @MNDoddie5

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MummywithMND

@MummywithM

2 years

I am beyond devastated. @chrisrimmerMND changed my life and fight beyond measure. I will be forever grateful for his leadership and friendship. What a hero we have lost @DarbyRimmerMND ❤️

Darby Rimmer MND Foundation

@DarbyRimmerMND

2 years

It is with deep, deep sadness we bring you the devastating news that on Monday 18th April, our Co-Founder @chrisrimmerMND sadly passed away after a brave battle with motor neurone disease

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MummywithMND

@MummywithM

2 years

£50m was promised almost 6 months ago and not a single £ has been received. Vital funds for #MND research must be released NOW by @GOVUK to stop #MND from killing thousands of us each year. @MNDoddie5 @mndassoc @GillianKeegan #united2endmnd

David Setters

@dsetters

2 years

Great piece by @joncoates73 in Sunday @Daily_Express on what MIGHT hold up £50m @GOVUK investment in @mndresearch Time doesn't wait for @united2endmnd patients. Hoping @GillianKeegan listens to @onein300 @AmmarAlChalabi @sean_uk Tuesday & kickstarts vital #United2endMND research

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MummywithMND

@MummywithM

7 months

So well deserved! We're doing it for Doddie. @MNDoddie5 is a relatively small charity in the MND world, but it is giant in its leadership and determination. People living with #MND can never thank you enough. Your fundraising is colossal and your heart is huge.

My Name'5 Doddie Foundation

@MNDoddie5

7 months

Special moments - JustGiving Charity of the Year 2023 💙💛 It’s been a year filled with highs and challenging moments & we can’t thank everyone who supported us & the MND community enough 🤝 Let’s raise a glass, then get back to kicking MND into touch 💪

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MummywithMND

@MummywithM

9 months

Thank you @MartinJ_MND the trial data should be shared immediately and patients must be given this safe, cheap, effective drug #proleukin @mndassoc @healthandthings @Tanyacurry2 must direct every resource towards achieving this.

Former Aberdeen footballer with MND demands action on pioneering trial data

Martin Johnston first took part in a clinical trial in 2018, months after being diagnosed with MND, and has now called for the full findings to be released to give people with MND "more time with...

www.aberdeenlive.news

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MummywithMND

@MummywithM

3 years

@CharlotteHawkns thank you for your unending support. We must fight for funding that will end MND so that girls like you don't lose their Dads and girls like mine don't lose their Mummies; she's only 4.We are #United2EndMND @Rob7Burrow @DoddieWeir5 @mndassoc @MNDScotland

Charlotte Hawkins

@CharlotteHawkns

3 years

It would have been my Dad’s 85th birthday today, but we lost him to Motor Neurone Disease. I’ve just added my signature to this petition calling for more funding for urgent research into this devastating disease. Please add yours too 🙏 @mndassoc

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MummywithMND

@MummywithM

7 months

Thank you @MNDoddie5 for this unequivocal support. You get it. You hear us. You understand that there is a right and moral argument that patients should be treated with Proleukin as soon as possible. @mndassoc @Tanyacurry2 @healthandthings @DrBrianDickie

My Name'5 Doddie Foundation

@MNDoddie5

7 months

We believe that if results of the #MIROCALS trial are as positive as we all hope, everyone who is eligible should have access to the drug without delay. People with MND don't have time to wait & we'll continue to push hard for progress. Full statement:

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MummywithMND

@MummywithM

3 years

We tried for a baby for 7 years, eventually conceiving with #IVF & 1 Yr later I was diagnosed with a terminal illness that has no treatment, no cure. Pls sign + RT. We need funds for research NOW. MND must be stopped. @ivfbabble #infertility #MND

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@MummywithM

1 year

@BBCLookNorth @DrFrancesRyan I think this makes Rob's position on being carried very clear. Perhaps try to view life more positively in future.

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MummywithMND

@MummywithM

9 months

Public Service Announcement: Get #lifeinsurance with #criticalillness cover. I didn't think I needed it at 37 and it was on the 'To Do' list. It's harder #dying of #MND knowing that I didn't protect my family in this way. Don't make the same mistake. Please.

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@MummywithM

3 years

We desperately need more funding from @GOVUK for targeted MND research. If not, 1/300 people will continue to die from it. People like me. Sign + RT to send a message to @BorisJohnson that you want an end to MND. @GloriaDePiero @piersmorgan @sallynugent

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@MummywithM

3 years

Absolutely right! There are treatments coming but only if #MND is properly funded to allow TARGETED research. The right thing to do is to provide £50 million NOW. How many more of us will die waiting? @CMO_England @mndassoc @MNDoddie5 @MNDScotland

APPG on Motor Neurone Disease

@APPGonMND

3 years

“Now we can actually point to clear breakthroughs in research that need that extra money to take us through to something which a few years ago seemed impossible – working towards a cure for MND.” Our Chairman @ALewerMBE on why #MND needs targeted funding.

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MummywithMND

@MummywithM

3 years

@BurrowSeven @mndassoc I'm also living with MND and I'm so delighted that my sister has bought me a 'share' for Christmas. Fantastic idea and I'm so excited to watch his progress.

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MummywithMND

@MummywithM

3 years

So grateful to be honoured by @ChrisJohnsonQPM and @WMPolice on Global #MND awareness day. Delighted to be considered amongst some of the greats @DoddieWeir5 @chrisrimmerMND @Rob7Burrow @LJohnrose @CharlotteHawkns we are #United2EndMND @mndassoc

Chris Johnson QPM

@ChrisJohnsonQPM

3 years

On Global MND Awareness Day a huge thank you to @WMPolice for allowing me to name the latest puppy litter after my MND Heroes. @CharlotteHawkns @Rob7Burrow @PrimroseHospice @MummywithM @TrustLen @MNDoddie5 Chris Rimmer, Stephen Darby, John Rollason @mndassoc

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MummywithMND

@MummywithM

3 years

Gov. guidance suggests there should be 'flexibility in vaccine deployment at a local level' for 'exceptional individualised circumstances'. I'm terminally ill and have lost the last 9 months of my life. GP won't help, CCG knows nothing. Twitter? Can you help? @MattHancock

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MummywithMND

@MummywithM

2 years

Organising a fundraiser at my daughter's school @mndassoc to mark my official diagnosis day on May 3rd. Are you able to help me with bunting, posters, leaflets etc? It would be great if there was an event kit? @ChrisJamesMND @sallylight17 😊

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MummywithMND

@MummywithM

3 years

11 year old Lucy is right. Finding a cure for MND is everybody's problem. Blown away by her support and commitment to fighting for those of us with MND. @DoddieWeir5 @MNDoddie5 @Rob7Burrow @mndassoc @DarbyRimmerMND

I am completely blown away by this incredible, alternative Christmas...

I am completely blown away by this incredible, alternative Christmas message. Lucy is my best friend's daughter, aged just 11 and is compassionate and...

www.facebook.com

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MummywithMND

@MummywithM

3 years

A very happy 51st birthday to the big man @DoddieWeir5 . I look forward to wishing you a happy 60th. We count up not down 💪 @MNDoddie5 thank you for being an inspiration to me 💙💛 #United2EndMND

My Name'5 Doddie Foundation

@MNDoddie5

3 years

A lovely message from @DoddieWeir5 on his 51st Birthday. Here's hoping he gets a new cake this year... @JohnDeere 🎂🚜

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MummywithMND

@MummywithM

3 years

When born in 1980, I had no idea that 185,000 of the then living UK pop' would be diagnosed with MND or that I'd be 1 of them. 80,000 are dead. 105,000 are living with MND or don't yet know their fate. Let's be #United2EndMND sign and share. Please.

Lee Millard

@onein300

3 years

Time to embarrass myself in aid of #united2endmnd . This photo is me in 1966 with sharp tool! Little did I know about 175,000 of then living UK pop would get #mnd , including this little chap, in their lifetimes. Please sign/share. And beat that photo!

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MummywithMND

@MummywithM

3 years

Today I heard that a colleague (57) and an ex student (30) both died from Covid. Shame on the deniers who have fuelled this wave. I'm beyond fearful. I want the vaccine now. People with #MND can not #lockdown because they require care. @mndassoc @MattHancock

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MummywithMND

@MummywithM

1 year

Proleukin was shown to significantly increase survival time amongst people with MND. The drug is safe, cheap and readily available. We want it now. When will @mndassoc commit to saving our lives rather than patients of the future? @Tanyacurry2 @profcjmcdermott @AmmarAlChalabi

Nicola Waters

@AberdareNic

1 year

Mirocals was funded by charity donations and taxpayers, yet the trial data has been *sold* to a start up company. It will take *years* for them to get a new product to patients when the trialled drug is available now. Why?

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MummywithMND

@MummywithM

9 months

Strong, determined, positive...just like Doddie 🩵. Thank you @MNDoddie5 . #MND Community please retweet. We must be relentless in our pursuit of this effective treatment.

My Name'5 Doddie Foundation

@MNDoddie5

9 months

We believe that the 8 month delay in gaining sight of the data from the MIROCALS trial involving Proleukin is unfortunate and unacceptable. We call on leaders of the consortium to release the data so research experts can assess it further. Full statement

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MummywithMND

@MummywithM

3 years

This is an open letter to the UK Government which will be delivered soon. Effective treatments are very close, but critical investment is needed. If you are living with #mnd , please add your name. @Rob7Burrow we need your support! #united2endmnd

We are Patients United2EndMND

Changing the Conversation

united2endmnd.org

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MummywithMND

@MummywithM

9 months

Misleading to focus on high dose of #proleukin used for kidney cancer @mndassoc we know that the drug is easily dispensed in low, safe, trialled dose required for #MND patients. We are focused on removing barriers to treatment. We need you to expedite release of data by mid Aug.

MND Association

@mndassoc

9 months

The MND Association is fully committed to sharing progress being made around emerging treatments on a more frequent basis. We appreciate the level of frustration among the #MND community. Please click below for our latest update.

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MummywithMND

@MummywithM

9 months

Are you listening? @mndassoc @Tanyacurry2 @healthandthings It's time to change the narrative. It's time to tell the true stories of #MND .

Davina Rivers

@DavinaRivers

9 months

@AberdareNic When my husband Eric was diagnosed the campaigns were all about optimism and we weren’t allowed to say the word suffering when talking about MND. Well I can speak from the heart when I say my husband suffered. More urgency is needed if change is ever going to happen.

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MummywithMND

@MummywithM

3 years

Incredible work by @5eatFor and I am so honoured to be supported by you all. A fantastic endeavour in the support of @MNDoddie5 and everyone who is #United2EndMND @mndassoc @DoddieWeir5 @MNDScotland

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MummywithMND

@MummywithM

3 years

Great to talk with @GloriaDePiero from @TimesRadio + @ALewerMBE about the @mndassoc #scrapsixmonths campaign and our quest for 50 million pounds for targeted MND research. Tune in at 11.35am tomorrow! #United2EndMND

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MummywithMND

@MummywithM

3 years

Increased funding from @GOVUK for #MND research could save my life and the lives of 200, 000 of current UK population. MND is not incurable just underfunded. Please sign and RT @Rob7Burrow @BurrowSeven @leedsrhinos

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@MummywithM

3 years

Just a little bit exciting! Fantastic news @EuansCentre . 2021 is The year for an MND treatment breakthrough!

Euan MacDonald Centre

@EuansCentre

3 years

New #MND treatments that work by boosting energy in nerve cells could be developed thanks to exciting new research findings from @DrArpan100 . With @bhuvaneish and Prof. Siddharthan Chandran & thanks to @mndassoc @The_MRC @MNDoddie5 @UKDRI @AnneRowlClinic

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MummywithMND

@MummywithM

3 years

Please retweet, share, speak out. Terminally ill people must be vaccinated now. @Rob7Burrow @DoddieWeir5 @DarbyRimmerMND @piersmorgan @trishgreenhalgh @ChrisJohnsonQPM @Jaynes__World @ProfKarolSikora @TinaWalksLondon @MNDA_Leics @LJohnrose @MNDoddie5 @BBCNews

Kety

@ketytheyeti

3 years

This is me. I have #MND #ALS . I can't shield because without my carers, I'll die. If I catch Covid, I'll die. I need my #CovidVaccine NOW. Please retweet to raise awareness. @mndassoc @MattHancock @AmmarAlChalabi @IanPrattMNDF @DarbyRimmerMND @mndcampaigns

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MummywithMND

@MummywithM

9 months

Thank you for your vital work and ongoing support @AhmadAlKhleifat we couldn't agree more and welcome an immediate preprint of trial data @mndassoc @healthandthings must respond with vigour and commitment. Nothing less than effective treatment will be accepted by #MND community.

Dr Ahmad Al-Khleifat

@AhmadAlKhleifat

9 months

Committed to MIROCALS trial & I believe in its potential. Not leading, but proud of my role. Now, I urge the consortium to join hands with the MND community and drive for publication and global access to this medication. An urgent meeting with trial leads is needed.

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MummywithMND

@MummywithM

3 years

Christmas is over and so my mind turns to the coming months and the aim of getting a vaccine. My very healthy carer is booked in for the 6th Jan yet my GP prefers to bin the doses from missed appointments rather than put me on standby @MattHancock @PublicHealthEng @NHSMillion

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MummywithMND

@MummywithM

3 years

Let this day be the start of something really special. The beginning of the end for MND. @mndassoc @DarbyRimmerMND @MNDoddie5 @DoddieWeir5 United to End MND.

Ammar Al-Chalabi

@AmmarAlChalabi

3 years

We need to find a cure for #ALS #MND . It will kill 1 in every 300 people. In the UK, most research funding currently comes from charities like @mndassoc , @MNDoddie5 and @MNDScotland . Now we need @GOVUK to step up and build on the huge progress the ice bucket challenge generated.

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MummywithMND

@MummywithM

3 years

200, 000 of the current population are facing an MND diagnosis and they don't yet know. It needs to be the concern of the many not the few! #United2EndMND

Lee Millard

@onein300

3 years

@APPGonMND @JimBethell It’s vital that ‘targeted’ funding for lab to patient research for #mnd is increased - we are lost in neurodegenerative disease funding & the result? Low lowbfunding. This must change - otherwise 200,000 of current uk population will develop #mnd & will die of it. #united2endmnd

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MummywithMND

@MummywithM

3 years

The time is now. @RishiSunak @BorisJohnson must provide appropriate funding for targeted #MND research. Without it, hundreds of thousands will continue to die. Enough. @mndassoc @MNDoddie5 @MNDScotland #united2endmnd

Michael Booker

@MickBooker

3 years

As we wait to see if @RishiSunak ⁩ delivers the £50m needed for a Motor Neurone Disease institute here’s a moving piece by @joepike about his inspirational husband Gordon in today’s Sunday Express

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MummywithMND

@MummywithM

3 years

Leeds is hugely under represented on the petition forc #MND research ££. Surely you aren't going to let us Southern Softies win? Without £ from @GOVUK 200,000 of current UK pop' will die of MND. Rally the troops; ask them to sign+RT @leedsrhinos @RugbyLeeds

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MummywithMND

@MummywithM

2 years

My best friend Laura, is 'Cantering for a Cure' for #doddieaid #MND #united2endmnd . @MNDoddie5 @DoddieWeir5 any equestrian merchandise on the horizon as she is gathering a great team and has made her own for now?! #doingitfordoddie

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MummywithMND

@MummywithM

9 months

@MartinJ_MND Thank you for sharing your experience and I am sorry that you went through it for placebo. Are trial Drs now supporting you to access the drug? We will continue to push for early access for every #MND patient that wants #Proleukin @mndassoc

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MummywithMND

@MummywithM

9 months

@SueNelms1 @mndassoc @Tanyacurry2 The MND community deserve and demand better. You are clearly unaware that there is an effective treatment sitting in hospital pharmacies that we are currently denied access to. If you were dying, and had a six year old daughter, I am sure you would share our outrage.

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MummywithMND

@MummywithM

9 months

@SueNelms1 @mndassoc @Tanyacurry2 Proleukin. Trialled for MND over 21 months. Reduced death rates overwhelmingly during the course of the trial. Don't tell me to sit by and wait. People living with MND don’t have time for all the red tape. The drug is safe and effective and people want it now.

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MummywithMND

@MummywithM

8 months

Stephen Darby Baby! We are with you and so is @chrisrimmerMND . Here's to another five years @DarbyRimmerMND . The fight goes on.

Darby Rimmer MND Foundation

@DarbyRimmerMND

8 months

5 years ago today on Wednesday 12th September 2018 I was diagnosed with motor neurone disease. The fight goes on #attackmnd

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MummywithMND

@MummywithM

3 years

I've lost a 14 year teaching career to MND. In 2018 I was a fully functioning teacher and now I need 24hr care + a machine breathes for me. Will teachers stand with me against MND? @EdSupportUK @NASUWT @ASCL_UK @TeacherToolkit please sign and RT.

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MummywithMND

@MummywithM

3 years

This open letter to UK Government is penned with 1 line powerful and heartbreaking statements from a fraction of those living in the UK with #mnd . In 1 line we lay ourselves bare. If you have MND, click to sign. Make history! We need you! #united2endmnd

We are Patients United2EndMND

Changing the Conversation

united2endmnd.org

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MummywithMND

@MummywithM

3 years

A vital doc for @sajidjavid @KwasiKwarteng @The_MRC @NIHRresearch to read @GOVUK did NOT spend c£16m in 19/20 on TARGETED @mndresearch MPs, Ministers & advisers need to understand ineffectiveness of current funding process & how it is failing @MNDpatients @ALewerMBE @mndassoc

Lee Millard

@onein300

3 years

Only 2 weeks until @govuk spending review complete. Here is the #united2endmnd 1 pager on why a new funding model is needed for #mnd Targeted Research. Only £5m spent by @The_MRC in 2019/20 and not as reported £15.9m. Why? This and more here

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MummywithMND

@MummywithM

3 years

@MNDoddie5 @DoddieWeir5 @Rob7Burrow @BurrowSeven @DarbyRimmerMND @MNDScotland Please retweet in support of every person living with MND and those that we have lost #Scrap6months we are #United2EndMND .

Times Radio

@TimesRadio

3 years

Emma Moss, motor neurone disease patient, says thousands have died without ever having received the benefits they were due because they were unable to prove that they had less than six months to live. 🔊 @GloriaDePiero | @MummywithM | @ALewerMBE

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MummywithMND

@MummywithM

3 years

We are compiling an open letter to UK Government - If living with #mnd in UK please add your name. Over 100K of UK public signed our petition - Let’s thank them with our 1 line stories of life with #MND @Rob7Burrow we don't yet have your support.

We are Patients United2EndMND

Changing the Conversation

united2endmnd.org

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MummywithMND

@MummywithM

2 years

Absolute heroes ❤️ @dsetters @onein300 I am so grateful for your leadership and friendship x

Jayne Halhead 🌹

@Jaynes__World

2 years

👏 You are SO worthy! Creators of the game-changing #United2EndMND campaign, #MND Warriors @onein300 and @dsetters (whom I'm chuffed to call my friends), have been shortlisted in the Volunteer of the Year category in the prestigious #ThirdSectorAwards ! 👀

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MummywithMND

@MummywithM

3 years

I've lost a 14 year teaching career to MND. In 2018 I was a fully functioning teacher and now I need 24hr care + a machine breathes for me. Will teachers stand with me? #teachertwitter #teacher5oclockclub #teaching #teacherspotlight Please sign and RT.

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MummywithMND

@MummywithM

1 year

Living with #MND my emotional state can be fragile. This took my breath away despite wearing my ventilator. Absolutely beautiful. How intrinsic to life music is. @ClassicFM @CharlotteHawkns

Classic FM

@ClassicFM

1 year

The coronation classic that everyone is talking about... 👑 Handel’s ‘Zadok the Priest’ in a supermarket flashmob.

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MummywithMND

@MummywithM

3 years

A vital doc for @LucyChappell2 @CMO_England to read @GOVUK did NOT spend c£16m in 19/20 on TARGETED @mndresearch MPs, Ministers & advisers need to understand ineffectiveness of current funding process & how it is failing @MNDpatients . @MNDoddie5 @mndassoc @MNDScotland .

Lee Millard

@onein300

3 years

Only 2 weeks until @govuk spending review complete. Here is the #united2endmnd 1 pager on why a new funding model is needed for #mnd Targeted Research. Only £5m spent by @The_MRC in 2019/20 and not as reported £15.9m. Why? This and more here

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MummywithMND

@MummywithM

7 months

@Tanyacurry2 @ALewerMBE @APPGonMND @mndcampaigns @ChrisJamesMND @mndassoc @ALewerMBE was patient access to Proleukin discussed as urgen priority? @mndassoc response to this issue has been woeful. I've been tweeting @Tanyacurry2 for months and not been responded to or acknowledged once. Not once. An appropriate way to treat a person living with MND?

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MummywithMND

@MummywithM

9 months

@GregBroadhurst @Clarkiejc1979 @MNDManchester @mndresearch @lev_ian The organisation lacks energy, urgency, direction, leadership at every level. Patient community being disastrously let down regarding MIROCALS and access to #proleukin the MNDA shows no desire or commitment to support. Lacklustre. When will MNDA act with force and conviction?

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MummywithMND

@MummywithM

3 years

We will never give up ❤️

Doddie Weir OBE

@DoddieWeir5

3 years

we keep fighting Lucy, we keep fighting ❤️

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MummywithMND

@MummywithM

9 months

@mndassoc @Tanyacurry2 @healthandthings There has been a tide change within the community prompted by inaction, apathy and platitudes. Are you aware? Time for change. Time for treatment.

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MummywithMND

@MummywithM

9 months

@Jaynes__World @NicolaM59429967 @Clarkiejc1979 @mndassoc @MNDoddie5 @horseandhound @GOVUK Thanks for sharing this Jayne. A tough read. MND has devastated my family financially, physically and emotionally. I miss my freedom terribly. Thanks for always being our tireless supporter.

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MummywithMND

@MummywithM

2 years

We'll carry on 💖 We certainly will, Sir Kev! #united2endmnd #MND

Sky Sports Rugby League

@SkySportsRL

2 years

🗣️“I represent the whole MND community now, it’s brilliant to continue raising awareness." Kevin Sinfield has today been awarded his OBE 🎖️ for his outstanding fundraising efforts for the MND Association in support of ex-teammate and friend Rob Burrow🦏🏉

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MummywithMND

@MummywithM

3 years

@Rob7Burrow 'DaddywithMND' just like you I'm mourning a future with my family, but our children will grow up with our same sense of courage and fight. We are #United2EndMND and we are strong. I know that your team can help us to reach 100k @leedsrhinos

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MummywithMND

@MummywithM

1 year

Absolutely so well deserved @AberdareNic @dsetters @onein300 . An inspiration to us all 🙏

Nicola Waters

@AberdareNic

1 year

What an honour to be named a Doddie’s champion with @onein300 and @dsetters 😭 I’m feeling very emotional this morning! Doddie has been an inspiration to me, I always think of him saying to not look back or forward but to focus on the now. Together, we’ll beat MND 👍❤️

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MummywithMND

@MummywithM

3 years

@dsetters @LaytonCharlotte @onein300 @mndresearch @Jaynes__World @joepike @crispo1974 @DoddieWeir5 @sean_uk I've tracked her down and she's on board. Says the Hedgehogs are sorted for votes and they'll campaign for us ♥️ #United2EndMND #hedgehogs #onourside

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MummywithMND

@MummywithM

3 years

@sallynugent @BBCBreakfast @leedsrhinos @mndassoc For families like mine ❤️ thank you Kevin.

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MummywithMND

@MummywithM

9 months

@trimifeda Right. So that my 100% fatal terminal illness can be cured with positive thoughts? Please think before you post.

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MummywithMND

@MummywithM

4 years

@MrAndrewCotter @DoddieWeir5 I've been waiting for this. Like the big man himself, I'm fighting MND hoping to make a big b'day this year - my 40th. So glad you have narrated this. Give my love to the girls - they/you have really made me smile this lockdown. Lots of love, to Doddie too. Big 50!

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MummywithMND

@MummywithM

4 years

Happy 50th Birthday @DoddieWeir5 I know this was a huge aim for you. Now, on to 51, 52, 53, 54... Keep going Big Man. I'll be fighting alongside you. Thanks for everything. Lots of love ❤️ #MND #Doddie5Ride #nowhiteflags

My Name'5 Doddie Foundation

@MNDoddie5

4 years

HAPPY BIRTHDAY DODDIE 🥳 Please join us in celebrating by recording your own video saying cheers to Doddie and donate to our Birthday fundraiser: Let’s kick MND into touch! #bepartofthecure #happybirthdaydoddie

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MummywithMND

@MummywithM

3 years

@MickBooker We are so grateful for your support @MickBooker . #MND has been chronically underfunded and we deserve better as do the 200,000 Brits alive today that don't yet know they will die from MND. #united2endmnd @sajidjavid @BorisJohnson @GillianKeegan

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MummywithMND

@MummywithM

4 years

@Bethannestagram @rickygervais I'm terminally ill and currently making my own videos for my family. Yesterday, I filmed a short video for my daughter called 'Take no shit. Promise?'. She's only 3 so it's one for the future... Afterlife is breath taking and brave. Thank you @rickygervais

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MummywithMND

@MummywithM

9 months

@itmfundraisers @mndassoc @Tanyacurry2 What we are currently asking for - a release of MIROCALS trial data has absolutely nothing to do with government and plenty to do with @mndassoc . Please read around the issue to ensure that your comments are fair and appropriate.

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MummywithMND

@MummywithM

3 years

@ketytheyeti told me her carer has Covid. She is exposed to a team of 12 carers, their families, kid's schools, their partner’s workplaces...Those who require care can not shield. Give terminally ill people the vaccine now. @MattHancock @mndassoc #CovidVaccine @piersmorgan

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MummywithMND

@MummywithM

3 years

Made me smile today @MNDoddie5 . Tins only available to purchase after signing the petition! #AprilFoolsDay #AprilFools #United2EndMND #MND #Petition

My Name'5 Doddie Foundation

@MNDoddie5

3 years

We're excited to launch our latest product, Doddie'5 Tartan Paint 🎨 This high quality, water-based paint is perfect for giving your rooms the tartan makeover you've always dreamed of 🔵🟡

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MummywithMND

@MummywithM

3 years

Spoke with GP again. Total refusal to take on board GOV advice to make local vaccination decisions for those with degenerative and terminal conditions. Told to wait in line. No reason to and time is precious @MattHancock @BBCNews @piersmorgan #Covid -19 #CovidVaccine #MND

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MummywithMND

@MummywithM

3 years

@benbrooksdutton I have wrapped a bottle of mine to be given to my daughter at the right time x

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MummywithMND

@MummywithM

3 years