MummywithMND @MummywithM
Kicking the crap out of MND one day at a time! Joined August 2019-
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Please read the messages from people affected by MND - it is absolutely heartbreaking that we are being kept hanging on, nearly two years since the trial ended @mndassoc @kingsmnd @neuroshef @SussexNeuro @QMneuroscience
Please read the messages from people affected by MND - it is absolutely heartbreaking that we are being kept hanging on, nearly two years since the trial ended @mndassoc @kingsmnd @neuroshef @SussexNeuro @QMneuroscience
Show your support by signing our open letter to the Mirocals consortium. You can sign the letter using the link below united2endmnd.org/support-miroca…
Show your support by signing our open letter to the Mirocals consortium. You can sign the letter using the link below united2endmnd.org/support-miroca…
#mirocals trial ended nearly 2 yrs ago & we still await results! Typical survival once diagnosed with #mnd is just 2yrs! Something wrong here? If touched by #mnd please support @DarbyRimmerMND @Rob7Burrow @edslater & Marcus’s OPEN letter to the consortium. BW Lee #united2endmnd
#mirocals trial ended nearly 2 yrs ago & we still await results! Typical survival once diagnosed with #mnd is just 2yrs! Something wrong here? If touched by #mnd please support @DarbyRimmerMND @Rob7Burrow @edslater & Marcus’s OPEN letter to the consortium. BW Lee #united2endmnd
To be very clear. Lives could be prolonged if #MND patients were given Proleukin. Commercial arrangements HAVE been prioritised over patient's lives. MIROCALS consortium must take immediate remedial action to get this drug to patients NOW. Please sign open letter use link below.
To be very clear. Lives could be prolonged if #MND patients were given Proleukin. Commercial arrangements HAVE been prioritised over patient's lives. MIROCALS consortium must take immediate remedial action to get this drug to patients NOW. Please sign open letter use link below.
Huge thanks @PeterAsh_85 #Corrie for supporting @DarbyRimmerMND @Rob7Burrow @burrow_geoff @edslater Marcus & Louise Stewart letter to @mndassoc @neuroshef @kingsmnd @BSMSClinNeuro @QMneuroscience asking for TRANSPARENCY on #Mirocals trial. Pls support @ united2endmnd.org/support-miroca…
Please read this important letter and consider supporting. People with MND are desperate for answers. Thank you to @DarbyRimmerMND @stephhoughton2 @Rob7Burrow @burrow_geoff @edslater and Marcus and Louise for their leadership. 🙏
Please read this important letter and consider supporting. People with MND are desperate for answers. Thank you to @DarbyRimmerMND @stephhoughton2 @Rob7Burrow @burrow_geoff @edslater and Marcus and Louise for their leadership. 🙏
Huge thanks @DarbyRimmerMND @stephhoughton2 @Rob7Burrow @burrow_geoff Jo & @edslater Marcus & Louise Stewart for sending open letter requesting TRANSPARENCY on commercial contracts for #Mirocals to involved scientists & @mndassoc To show support please see united2endmnd.org/support-miroca…
@Tanyacurry2 @danielboffey It's also vital @united2endmnd @MNDPatients challenge "accepted ways" of accessing new treatments & demand transparency required of a taxpayer/charity funded trial like #Mirocals, especially when our lead charity is a member of Consortium. @mndassoc @kingsmnd @SussexNeuro
So true and agree @Tanyacurry2 this needs addressing urgently for those who are eligible for Tofersen. Do you have any thoughts on being denied a second treatment for mnd (Proleukin) due to @mndassoc and other Consortium members agreeing a deal with ILTOO as well? #attackmnd
So true and agree @Tanyacurry2 this needs addressing urgently for those who are eligible for Tofersen. Do you have any thoughts on being denied a second treatment for mnd (Proleukin) due to @mndassoc and other Consortium members agreeing a deal with ILTOO as well? #attackmnd
If we had transparency we've requested for months on process followed by #Mirocals Consortium to select commercial partner #Iltoo, it would help. Why a small company? Why a NEW drug when trial drug #Proleukin already available? Lessons MUST be learned for future trials-see image
If we had transparency we've requested for months on process followed by #Mirocals Consortium to select commercial partner #Iltoo, it would help. Why a small company? Why a NEW drug when trial drug #Proleukin already available? Lessons MUST be learned for future trials-see image https://t.co/AXFTItVCe0
Broken record Whatever the data will be, will be. It’s the processes that have got us to this situation that is more worrying. Serious lessons need to be learned. #attackmnd
Broken record Whatever the data will be, will be. It’s the processes that have got us to this situation that is more worrying. Serious lessons need to be learned. #attackmnd
@UKMNDRI unites @MNDPatients & family/friends, @mndresearch scientists, @NIHRresearch @The_MRC & charities @mndassoc @MNDScotland @MNDoddie5 @LifeARC to accelerate search for a cure #United2EndMND @neuroshef @kingsmnd @profcjmcdermott @KennyLogan See ukmndri.org 2/2
It’s 5 years since @onein300 and @dsetters first started their campaign for a new drive for translational research. Supported by the amazing @profcjmcdermott and @AmmarAlChalabi What a day for them all!! 🥳🔬🧪
It’s 5 years since @onein300 and @dsetters first started their campaign for a new drive for translational research. Supported by the amazing @profcjmcdermott and @AmmarAlChalabi What a day for them all!! 🥳🔬🧪
ADVOCATING for others takes TIME & ENERGY…@StarkeyJennie gives some of her precious time living with #MND to being @united2endmnd with @MNDPatients by writing another wonderful blog. Pls have a read #United2EndMND @mndassoc @MNDoddie5 @MNDScotland @lifearc1 @uclnpp @neuroshef
ADVOCATING for others takes TIME & ENERGY…@StarkeyJennie gives some of her precious time living with #MND to being @united2endmnd with @MNDPatients by writing another wonderful blog. Pls have a read #United2EndMND @mndassoc @MNDoddie5 @MNDScotland @lifearc1 @uclnpp @neuroshef
Required reading for @mndresearch scientists & charity executives. @StarkeyJennie puts TIME & ENERGY into ADVOCATING with this excellent blog. Please read & share @kingsmnd @neuroshef @UCLIoN @SussexMND @EdinUniNeuro @WaltonCentre @mndassoc @MNDoddie5 mndjourney.wordpress.com/2023/10/23/adv…
Thanks to our incredible supporters and the generous donations, since we launched @DarbyRimmerMND in 2019, our care grants partnership with the @mndassoc has made a real difference for those fighting mnd. Here is our grant support in numbers #attackmnd
A word from @ScottHastings13 about this year's Just a Sports Quiz. Get your tickets today at euanmacdonaldcentre.org/events/just-sp…
We are @patientsunited to accelerate progress towards meaningful treatments & a cure for #MND. Keeping an independent voice & working with @mndresearch scientists & @MNDoddie5 @DarbyRimmerMND @mndassoc @MNDScotland @lifearc1 to achieve those goals - see united2endmnd.org/who-are-we/
Patients are at the core of the #united2endmnd coalition working together with #mnd #als charities incl @MNDoddie5 @DarbyRimmerMND @mndassoc & @MNDScotland. Subscribe to our website & X (twitter) account @united2endmnd for updates. united2endmnd.org
This is the first therapy that offers HOPE to ppl living with MND. @mndassoc @mndresearch PLEASE have these difficult conversations. Those with MND should be able to concentrate on time with their families, not having to fight for information. Time is of the essence here 🙏🏼🙏🏼🙏🏼
This is the first therapy that offers HOPE to ppl living with MND. @mndassoc @mndresearch PLEASE have these difficult conversations. Those with MND should be able to concentrate on time with their families, not having to fight for information. Time is of the essence here 🙏🏼🙏🏼🙏🏼
John Adams MND Warrio.. @JohnAda10163823
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David Setters @dsetters
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Ed Slater @edslater
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MND Scotland @MNDScotland
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Lee Millard @onein300
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Ammar Al-Chalabi @AmmarAlChalabi
5K Followers 4K Following Professor of Neurology and Complex Disease Genetics, King's College London. Co-Director UK MND Research Institute https://t.co/CR2sIAKgHI #MND #ALS Specialist.
MND Campaigns @mndcampaigns
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Darby Rimmer MND Foun.. @DarbyRimmerMND
11K Followers 118 Following Email: [email protected] Website: https://t.co/k7QNaUrRlJ Instagram: darbyrimmermnd #AttackMND
Chris Johnson QPM @ChrisJohnsonQPM
5K Followers 1K Following Retired West Midlands Police ACC. Living with #MND.
Martin Johnston @MartinJ_MND
2K Followers 571 Following Diagnosed with Motor Neurone Disease in August 2018. Trying to raise awareness of the condition in the hope a cure can be found. Also @MJ_No9 🏴
red devil @pilko71
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🏔️ Paul @ Munros.. @Munros4MND
2K Followers 3K Following 🌟 Doddie Champion 🌟 Attempting to climb Scotland's 282 highest mountains (Munros) & raising money for @MNDoddie5 🏔 £75,000 & counting... #DoingItForDad 💔
Jude de Vos @heyheyjude23
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Andrew Heath-Richards.. @HeathRic1
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Davina Rivers @DavinaRivers
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Phillip Stone @sto94620
41 Followers 64 Following
David Hattersley @DavidHatte30183
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Lilly Whaler @WhalerLill81332
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Betty’s Brigade Fou.. @No_More_ALS
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DeepaK Kumar @Deepak13900
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Francisco jose Ribago.. @RibagordaAvila
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Mark wall @Markwall237947
14 Followers 40 Following
Jo Waller @wallerjo32
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GreyCurmudgeon @greycurmudgeon
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Pat Dolan @Team_Thriving
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Lucy Musson @lucysmusson
35 Followers 147 Following PhD student exploring the use of technology to improve outcomes for people living with motor neuron disease. Public Involvement Lead on the CONTACT-GAD trial.
Stuart Thom @StuartThom11
980 Followers 3K Following Ambassador of the My Name'5 Doddie Foundation.. Charity fundraiser.. Lover of all things sport..
Sally Ann Janes @SallyAnnJa26011
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AnitaWainwright @neets4372
200 Followers 978 Following proud wife, mother & grandmother❤ husband is an RAF veteran battling motor neuron disease 💔 lost my mother to sporadic CJD 💔
Scott Morris @mozzaghh
47 Followers 169 Following
Elon Reeve Musk @EMusk17300
172 Followers 718 Following
Mike Wilson* @Redsmail
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Sarah Hancock @SarahHanco19601
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Arthur @ArthurButcher44
1K Followers 721 Following #motorsports🏎️🏍️, #gardening💐,. #once sponsored an Olympics 🇬🇧🏃♀️? …#MND/#ALS…cure desperately needed now!! for my daughter & others🙏🏼
Ken David @Love_Bulerose00
72 Followers 365 Following The challenge to success is overcoming yourself
Kirsty @Kirsty30422418
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Tabitha Stuttard @HelpTabithaEat
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Salina Harvey-Porter .. @salinahporter
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Ang Armstrong @TweeterAng
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Rachel Wakefield @mrbojanglessss
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Lisa Phillips @LisaPhi69977561
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Julie White @JulieWh30446198
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Jessica Jones @jaffa_girl
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Susan Whalley @WhalleySusan
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Roberta Daw @delphdawdler
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Skye Green 💚🏴�.. @SkyeGreen01
12 Followers 15 Following Plymouth born and raised. Avid follower of PAFC. Love the hills and mountains. Made the leap to living on Skye in our new house. Loving it!
Darren Whitley @DarrenWhitley69
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Mel Willis @MelWslt2b
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Paramedichhh🏴�.. @paramedichhh
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Sharon Gillies @SharonGillies15
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Sarah Nutting🎄 @mummynutting
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EndMND @EndMND
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Katie Hale @ktjhales
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Chris Gette @ChrisGette
111 Followers 365 Following
Rebecca Oxley @Rebecca_Oxley_
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aka SoCalGal @KatiesQuine
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MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
Rob Burrow CBE @Rob7Burrow
199K Followers 2K Following Proud owner of the Autobiography of the year 2022. You can get it at all book stores or Amazon. #toomanyreasonstolive Number 1 Sunday times best seller!
My Name'5 Doddie Foun.. @MNDoddie5
38K Followers 252 Following Registered Charity, established by Doddie Weir & friends to raise funds to aid research into Motor Neuron Disease & supporting fellow sufferers.
John Adams MND Warrio.. @JohnAda10163823
11K Followers 10K Following MND Warrior fighting to find a cure @mnd lifetime WBA supporter @WBA https://t.co/jGbYyoODnu?
Jayne Halhead 🌹 @Jaynes__World
6K Followers 4K Following In memory of my Dad, a burly #Lancashire dairy farmer, I'm raising awareness of motor neuron disease #MND/#ALS #MND #MoreNeedsDoing! Championing #Lancashire
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
Nicola Waters @AberdareNic
1K Followers 2K Following Valleys girl living in North Essex. Mother of two boys, age 12 and 9. Fighting MND one day at a time... #MND #ALS
David Setters @dsetters
2K Followers 2K Following Got slowly progressing MND. Luckier than most so have to make extra days count. I intend to! Making memories with family. Campaign, raise awareness & funds.
Ed Slater @edslater
22K Followers 2K Following Living with ALS/MND. Former Rugby Player for Gloucester and Leicester. Charlton Ath fan. No particular order 🙂
MND Scotland @MNDScotland
8K Followers 2K Following Making time count for people with motor neuron disease (MND).
Geoff Burrow @burrow_geoff
9K Followers 181 Following Husband to my beautiful wife, Irene, and Proud Dad and Grandad. Fighting to find a Treatment and Cure for MND - we are SO CLOSE 👍👊🤞
Sally Light @sallylight17
3K Followers 421 Following Previously Chief Executive of the MND Association. Ongoing supporter of the MND community. Pond swimmer and yoga student. Views my own.
Lee Millard @onein300
2K Followers 899 Following 1/300 is the lifetime risk of developing #ALS #MND. My living with Motor Neurone Disease blog.
Ammar Al-Chalabi @AmmarAlChalabi
5K Followers 4K Following Professor of Neurology and Complex Disease Genetics, King's College London. Co-Director UK MND Research Institute https://t.co/CR2sIAKgHI #MND #ALS Specialist.
MND Campaigns @mndcampaigns
8K Followers 2K Following Campaigning with people with motor neurone disease #MND @mndassoc Want to help raise awareness? Find out more here: https://t.co/pNRGqk2pLX
MND Research @mndresearch
13K Followers 511 Following Research Development team at the Motor Neurone Disease Association of England, Wales & NI. We fund and promote cutting-edge #MND research & organise #alsmndsymp
Darby Rimmer MND Foun.. @DarbyRimmerMND
11K Followers 118 Following Email: [email protected] Website: https://t.co/k7QNaUrRlJ Instagram: darbyrimmermnd #AttackMND
Chris Johnson QPM @ChrisJohnsonQPM
5K Followers 1K Following Retired West Midlands Police ACC. Living with #MND.
Martin Johnston @MartinJ_MND
2K Followers 571 Following Diagnosed with Motor Neurone Disease in August 2018. Trying to raise awareness of the condition in the hope a cure can be found. Also @MJ_No9 🏴
red devil @pilko71
2K Followers 2K Following Raising funds and awareness for MND, ST Old Trafford. live for today as tomorrow isn’t a given.
Teachers' Pensions @TPScheme
33K Followers 507 Following Administering your Teachers’ Pension Scheme on behalf of the Department for Education. To ask secure questions, go to ‘Contact Us’ on our website.
Hannah Barraclough @HannahBarraclo8
7K Followers 1K Following Rev'd. Bazza with a large astigmatism. Above average funny. From God’s own country: Yorkshire. Priest. She/her💪🏼🏳️🌈Views my own
Molly Boot @MollyBoot1
8K Followers 3K Following Rev’d | Musician | Theologian | Broadcaster | @greenbelt + @BritTrustTantur Trustee | Curate at @leadonchurch | Autistic | Queer 🌈 | They/Them
Dan Wuori @DanWuori
149K Followers 19K Following Dan Wuori, Ph.D. | Author, The Daycare Myth: What We Get Wrong About Early Care and Education (and What We Should Do About It) coming Sept. 2024 from @TCPress
UK MND Research Insti.. @UKMNDRI
551 Followers 58 Following A national network of MND centres that work together to understand how #MND happens, what treatment works, and test possible treatments in clinical trials.
DEB-MNDWARRIOR @DEB_MNDWARRIOR
929 Followers 909 Following https://t.co/k61gquuj0Z Hairdresser,Mother of 3 World just tipped upside down with a diagnoses of MND/ALS 💔
Amy Holmes @AmyHolmesMedia
3K Followers 2K Following TV and Radio @BBC3CR and @BBCLookEast. Cricketer for @STONYCC, @FVCC, @bhamunicorns & runner. Fairweather Bulls and Pears fan. Views my own. 🏳️⚧️
Robert Fletcher @RobertF75183389
221 Followers 369 Following Marching on together to beat MND/ALS. Where did all those yesterday's go? Fighting MND and other irritating illnesses.
Center Parcs UK @CenterParcsUK
70K Followers 5K Following 🌲Acres of forest, hundreds of activities, endless imagination - all in one short break. Official tweets. Our team aim to respond within 48 hours.
John Smith @SmithGlasgow
65 Followers 202 Following I know we can't change the world overnight, but let's do it by the end of the week. And yes, I have a really boring name.
ian muir @ianmuir65555681
116 Followers 125 Following
arta pireva @averip
36 Followers 469 Following
Pete Eveleigh @peterob99
298 Followers 443 Following Fighting Motor Neurone Disease head on with my amazing team #TeamEvo
John Hartley @johnhartley
1K Followers 2K Following 🏵️ Displaced Dalesman. 🏉 Rugby player in 40th season (😮💨). ❤️ Fundraising to help find a cure for MND on behalf of a top mate. 🤦♂️ Tragic Dad-joke habit.
VentMND Studies @VentMND
166 Followers 259 Following Studies exploring the use of home mechanical ventilation in MND. -VentMND - end of life decision making - closed -TVLife - Living with trachy vent- closed
Dr Usman Khan @healthandthings
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Gerard Duffy @gpduffy44
78 Followers 220 Following Campaigning for effective MND treatment and a cure. All views are my own. “Every day is a blessing. I’m so glad to be here”.
James Clarke @Clarkiejc1979
399 Followers 218 Following Fighting hard against MND insta: jamesclarke_kf
James - Diagnosed Dad @diagnosed_dad
583 Followers 157 Following 👋🏻 A Dad living & dealing with MND/ALS
Babs Michel @BBCBabs_michel
6K Followers 6K Following I present 4 weekly regional BBC Radio shows which cover all 8 counties in the East on Tues & Wed 6-10pm & Sat & Sun breakfast 6am-10am.
Simon Oxley @SimonOxley9
3K Followers 457 Following BBC Three Counties Radio newsreader and football commentator. All views my own not BBC’s.
Yorkshire Prose @YorkshireProse
37K Followers 1K Following Yorkshire family man. Laik a bit of RL and talk to me sen int fields now and then (sometimes it rhymes). Sailor ⚓ [email protected]
Barrie McDermott 🏉 @RLBarrieMc10
56K Followers 995 Following Family 1st, Rugby League & living life to the full! Proud Ambassador for @thegoodracingco honoured @leedsrhinos Hall of Famer No such word as can’t #1273 🦏
nigel leigh @nigelleigh3
20 Followers 10 Following Professor of Neurology/MND Researcher Co-lead of MIROCALS, EC H2020 funded trial of low dose interkeukin-2 in MND/ALS)
JVS @TheOfficialJVS
19K Followers 501 Following Jonathan Vernon-Smith. Broadcaster @BBC3CR & co-presenter of 'Keeping Up Appearances: The Luxury Podcast' @AudioAlways. Agent @MPCEnt. IG: jonathanvernonsmith
Andy Collins @Andyshowbiz
21K Followers 2K Following Breakfast show presenter at BBC THREE COUNTIES RADIO, ,TV presenter & always plays the part of the short little funny guy in Panto, lover of jazz hands
Tara Dolby @taradolby
3K Followers 2K Following @bbc3cr. Silver & gold Sonys producing @TheOfficialJVS and Iain Lee. Awarded endless fun producing @andyshowbiz.
Justin Bowen @JustinBowen71
3K Followers 1K Following Widowed dad making a new life. Former public servant & business owner, now writing books based on our family's experience of cancer & bereavement.
Sarah Lancashire @SarahLancsUK
83K Followers 165 Following Twitter page for the latest news & updates on actress Sarah Lancashire OBE. Posting daily photos and news. **Sarah is NOT on social media**
Jackson @lifewithALS
1K Followers 699 Following Mum of 2 wonderful boys. 3 cats. Diagnosed August 2022 with ALS determined to fight and stay strong until a cure is found. Forever hopeful 🧡💙🧡💙
🏴�.. @SanTheScot
3K Followers 3K Following Scot fae Isle of Bute 🏴 adopted Dublin🇮🇪 as home! Married 2 @redirish74. Want an Independent Scotland. Recently diagnosed with #MND 😔
LibbyMBC @LibbyMbc
37K Followers 2K Following young mom fighting metastatic breast cancer and advocating for all fighting terminal cancer. Located in Canada 🇨🇦 my link tree: https://t.co/7JO9CaAx8y
David Needham @Ned70
189 Followers 202 Following #LIVINGwith #MND. Diagnosed early 2014, with symptoms onset 2010, or earlier.
Alex Thorogood @ManVersusFilm
299 Followers 1K Following “Come in,” she said “I’ll give ya shelter from the storm.”
Widow in Waiting @widow_waiting
30K Followers 821 Following Adjusting to life with my husband’s #TerminalCancer… Grappling with #AnticipatoryGrief, parenting 3 kids (12/4/baby), & preparing for loss
Genius Brewing @GeniusBrewing
3K Followers 5K Following CRAFT meets LIGHT. Great tasting light craft beers. Buy @amazonuk @Ocado & https://t.co/XwFp8W6GT7. @MNDoddie5 fundraising partner. #SmartDrinking
50 Million @50MillionGin
176 Followers 130 Following 50 Million Gin is a delicious London Dry, designed to thank the MND heroes who campaigned for the £50 million funding into MND research. You are ginspirational!
rich crocker @richcrocker
187 Followers 130 Following A while ago I rode bikes and did CrossFit. Ex Cop diagnosed with MND in July 2020 making the most of ill health retirement. Tweeting my adventures with #MND
Sam & The Bucket List @SJHH32
552 Followers 1K Following #MNDWarrior diagnosed 5/3/22, aged 35. Living with MND and living my BEST life! Husband ~ Daddy ~ Son ~ Brother ~ Friend.
The Boy In The Tent @TheBoyInTheTent
44K Followers 936 Following Max has been camping out since March 2020 to raise money for our local hospice. #BoyInTheTent ⛺️ Parent Managed Account@MummywithM @RichardJaEvans @mndassoc Yes we are moving into a new era of both optimism but also tough challenge with the convention needing to change to put ‘planned urgency’ at the forefront. No point in great science if we are waiting as long as a trial itself after it for the results!
Does ANYONE (other than MND sufferer's, and families) “CARE” about potentially effective Treatments ?? Mirocals non release of Trial data is a SCANDAL 🤞🙏
We have had over 400 signings and messages so far supporting @DarbyRimmerMND @Rob7Burrow @edslater Marcus Stewart, partners and @burrow_geoff - Open letter to the Mirocals consortium. See all the messages here and perhaps add your voice? united2endmnd.org/2024/04/30/wou… #united2endmnd
Show your support by signing our open letter to the Mirocals consortium. You can sign the letter using the link below united2endmnd.org/support-miroca…
We have had over 400 signings and messages so far supporting @DarbyRimmerMND @Rob7Burrow @edslater Marcus Stewart, partners and @burrow_geoff - Open letter to the Mirocals consortium. See all the messages here and perhaps add your voice? united2endmnd.org/2024/04/30/wou… #united2endmnd
@MummywithM @razadu_ Coya in usa are planning a trial of low dose il2 (new proprietary form) along with abatacept but not started yet. There was a tiny phase 1/2. At this time the most comprehensive low dose il2 trials were IMODALS & the follow on pivotal MIROCALS, that we are waiting on (1/3) &
@MummywithM @razadu_ Who knows how this will play out? Coya combo is in very early stages. There is no powered trial ‘evidence’ for combo yet & at a guess the trial is going to take at least 3.5 years. I would think, even with skepticism, MIROCALS pivotal results will be published way before. & (2/3)
@MummywithM @razadu_ Let’s not forget the only commercial interleukin 2 available globally is Proleukin owned by iovance, as used in MIROCALS and IMODALS! But to answer original question the combo is NOT at all proven nor even abatacept alone. (3/3)
@Tanyacurry2 @danielboffey It's also vital @united2endmnd @MNDPatients challenge "accepted ways" of accessing new treatments & demand transparency required of a taxpayer/charity funded trial like #Mirocals, especially when our lead charity is a member of Consortium. @mndassoc @kingsmnd @SussexNeuro
MARCH OF THE DAY 2024. And breathe. What a weekend! 178 miles from Bradford to Liverpool. Thank you to all that took part and a big shout out to the support team and core walkers. We keep fighting to find a cure for MND. Together we will continue to #attackMND #MarchOfTheDay
Broken record Whatever the data will be, will be. It’s the processes that have got us to this situation that is more worrying. Serious lessons need to be learned. #attackmnd
The Association, alongside @MNDoddie5 & @MNDScotland, understand the continued frustration within the MND community that we are still awaiting publication of data from the MIROCALS trial. Read our full statement below.
#NewYear can be horrible for those in #grief. It brutally marks the passing of time since a loved one's death. So, for those who need it, my photo of 2023 was the morning after the winter solstice; the sun rising again, even after the longest night. Hold on. #bereavement
Thank you for recognising that we need to change the conversation. Also that our care needs transforming from more than palliative. ‘Hope’ & ‘future’ aren’t used in many sentences around PwMND. #ExcitingTimes
A huge honour to be asked to present at this years public Christmas lecture with my mentor , colleague and friend @suvankarpal - come along and hear about our hopes for the future in transforming lives of pwMND-
@StarkeyJennie Thank you Jennie - it is really important to us that we flip how we approach MND - we need to fight , plan for the future and work as a combined team
All set up and looking forward to our UK MND Nursing & Allied Health Professionals meeting today at SKYbar, Edinburgh #UKMNDNAHP
Thank you @Gebinh1 @beyondmnd @carolan65510005 @onein300 @BVirgo1 @steviemorris007 @AberdareNic for all your support in what we do - your tweets, pm and counsel are listened to and today I will advocate for you all - it takes a team
The JVS Show team today @BBC3CR
This morning I officiated at my father's funeral. It was one of the hardest things I've ever done, but the greatest privilege too. RIP dad x
You can watch and listen to this awesome experience I had chatting with @Rob7Burrow . It’s true - over 10m Rob would have beaten me in a race, but over 40m he would have beaten me by more!! Loved doing this, I hope you enjoy it too. bbc.co.uk/programmes/p0g…
‘I probably watch more rugby league than I do rugby union.’ Watch rugby union star @JonnyWilkinson's reaction when @Rob7Burrow challenged him over which sport is better. Listen now to Seven, Rob Burrow: bbc.in/3QBJVQy
A thorough & at times moving discussion today, which I was pleased to Chair. We will be writing to Ministers & speaking in the Chamber about how best to focus on helping those with the costs of living with #MND, especially energy costs.
Thank you to everyone who came to today's meeting of the APPG. We heard about how the #CostOfLivingCrisis disproportionately affects people with #MND and other terminal illnesses, and what Government can do about this.
@StarkeyJennie Another great read. You highlight perfectly the fragmented state of the MND world . It does often feel each of us is ploughing a lonely furrow. I definitely think we need a loud and concerted voice.
@AgamJung @Rob7Burrow @LeedsHospitals Brilliant to see Kev bang the drum again! @AgamJung Will you tell us your plans for @Rob7Burrow Centre to integrate @mndresearch to find treatments & a cure? Especially by working with @UKMNDRI & its scientific plan coordinated by top neuros @AmmarAlChalabi @profcjmcdermott
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