The "clinically extremely vulnerable" with #MND & other serious conditions no longer qualify automatically for Covid booster. Totally illogical when we do qualify for flu vaccine! Pls sign petition https://t.co/uo1FUmB7om @cv_cev @IanByrneMP @AphraBrandreth @_Chris_Coghlan 1/2

New research reveals what people with #MND/#ALS need when deciding on genetic testing: clear info, implications for family & tailored support.📃 This data can help inform decision aids to assist people when thinking about genetic testing. Read more🔗 https://t.co/uz8ROz4qDV

Our posters from ENCALS 2025 on findings from the @MNDRegister are now published on our website. Click the link below to read about the epidemiological insights, incidence and prevalence, as well as gender differences in #MND/#ALS. https://t.co/i0O4I4Hx3y

“Everyone with SOD1 MND must receive Tofersen and this impasse is unacceptable. This small amount of extra resource, for something that could be the difference between life and death, allows those affected more time with their loved ones. “Tofersen is an incredible new treatment

I’ve just joined a campaign to ask the Government to make sure people with the SOD1 type of #MND can access #tofersen, a life-saving treatment. Can you join too?

Huge thanks to @APPGonMND for writing to @AshleyDalton_MP on eligibility for #Covid booster which MUST include those with respiratory compromise n.b @MNDPatients. @IanByrneMP @AphraBrandreth @OllyGloverLD @MichaelPayneUK @_Chris_Coghlan @mndcampaigns @DarbyRimmerMND

We've hit 100 sign-ups to our Remote Research Platform! Thank you to everyone who has signed up; together, we’re building a more inclusive #MND/#ALS research community. 🔗If you haven't joined, sign up below! https://t.co/TEatvivKnK

Today marks the official launch of our new housing campaign, “Unlock the Door”. Too often, the grant system for funding home adaptations (known as Disabled Facilities Grants, or DFGs) fails people with MND. Write a letter to your councillor calling on your local council to

Marvellous to hear Sir Kev mention @catheyegazeart & @IanFlattTDM this morning, and emphasising the nationwide influence of his/his team's efforts on improving care & funding for @mndresearch for @MNDPatients @united2endmnd Thanks to @sallynugent @jonkay01 @ClaireRyanBBC.

@peaceful3023 @hmschuldt @PattiDArbs @TheRebelPatient @White919376Brad @1109PatriciaO @milli1548712 @GINGERDRUSSELL @krislioness1776 @Bubbabigcat @Lauria1960 @sikkat10 @mgtexp @llandoniffirg @pitreblake @Bagel69er @elonmusk @neuralink @rosejam181920 @Primrose771646 @Steph_Protect2A @WickedDog3 @thejavawitch2 @IndyInTheUSA @nicoletamb1224 @Momwhit @Spooks @WickedsGypsy @Highwayman75djm @A_RottieLover @SheriNetz1 @StellarArtoisGB @RedDay33 @Avatar218284922 @Sophia56891 @CharlotteHawkns @miketindall13 @JonnyWilkinson @Redsmail @dsetters @alanshearer @Phil_Vickery @tobyflood @edslater @MNDoddie5 @DarbyRimmerMND @IMNDA @mndassoc @LDShospcharity I’m living with #CerebralPalsy and, inspired by Kevin Sinfield’s incredible #7in7 Challenge, I’ve set myself my own challenge: I’ll be hand-cycling 10 km every day for 7 consecutive days. I’m grateful for any donations to #KevinSinfield fundraiser: https://t.co/m8Wdv8a26s

Calling all @LFC fans, we are staging March of the Day III next summer for @DarbyRimmerMND & @LDShospcharity. Three former reds taking part and we are looking for companies to sponsor them. Are there any Merseyside companies interested. Register here https://t.co/voBgbarKy2

Great illustration of Doddie's positive influence NATIONWIDE (not just in Scotland) on the @mndresearch environment. @MNDoddie5 - @united2endmnd with @MNDPatients, @UKMNDRI, @mndassoc @MNDScotland @lifearc @DarbyRimmerMND @APPGonMND

Leading UK neurologists show support for @MNDPatients wanting to access #Covid booster. Ridiculous we don't automatically qualify! @wesstreeting @AshleyDalton_MP Pls read statement & get this fixed https://t.co/c9nCKrr3QC @IanByrneMP @_Chris_Coghlan @ClaireCoutinho @burrow_geoff

People living with MND aren't automatically eligible for covid boosters. This petition is currently at 4,964 signatures, it needs 10,000 for the UK Government to respond. https://t.co/Ah3PS87axm Note: MNDA is not affiliated with this petition, we're sharing to raise awareness 🧡

March of the Day 3 - June 1-6 Supporting @DarbyRimmerMND & @LDShospcharity Great opportunity to come together many ex pros like @ChrisKirkland43 @JohnMcGinlay10 @mattholland8 @Jay8Spearing @MartinKelly1990 & @moraisfilipe20 to support the MND Community https://t.co/lVWNStqx8h

We really appreciate your support @IanByrneMP & @APPGonMND Thank you!

Developing new treatments is essential for MND,but the process is lengthy & people with MND don’t have time to wait. Repurposing means we can quickly see if any already available treatments could be effective in MND & get them into clinical trials as soon as possible. Read more👇

Leading UK neurologists show support for @MNDPatients wanting to access #Covid booster. Ridiculous we don't automatically qualify! @wesstreeting @AshleyDalton_MP Pls read statement & get this fixed https://t.co/c9nCKrr3QC @IanByrneMP @_Chris_Coghlan @ClaireCoutinho @burrow_geoff

Huge thanks to senior UK neurologists who signed this @MNDpatients appreciate your support. We need to avoid respiratory infection so, if having trouble accessing Covid booster, your advice will be a big help https://t.co/s2BM1Fp3JW @mndcampaigns @AmmarAlChalabi @profcjmcdermott

Absurd @MNDPatients don't automatically now get Covid booster. Cost to @NHSuk = £125K for all 5000 patients. Nothing compared to potential health hazard & increased pressure on hospitals. Why do we get flu vaccine & not Covid? Infection with either can kill. Thank you, neuros!

Today we heard from @mndcampaigns about the failure of the Disabled Facilities Grants process to meet the needs of people with #MND. It’s clear we need change otherwise people will continue to be left in unsafe & inaccessible homes. Read more here 👇 https://t.co/l6R0ny6yqa