For obvious reasons, we are, very sadly, part of an ever-changing community. See our post to find out more about our aims, who we work with, what we've done together & what we're doing to help accelerate progress in @mndresearch @UKMNDRI #United2EndMND https://t.co/7JPmEcOoIZ

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

My latest ‘Devil is in the detail’ post on the interpretation of #als #mnd trial statistics and other challenges. This one was prompted by the recent criticism of a paper led by Sheffield University published in late 2024. https://t.co/jtj7n18R26

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

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

There is also, importantly, a survey on the tools. If you do review the decision aids please complete the survey as the developers want to improve the tools as they go forward. https://t.co/S943fPQ0H6

#MND #ALS genetic testing is a complex subject both technically & perhaps more importantly whether to have testing if diagnosed or have a family history. What are implications for you/your family? New tools from Sheffield & Leeds Unis might help? (1/2) https://t.co/WFIP4QWKiN

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

Pls sign/share petition @challengingMND @edslater @DarbyRimmerMND @Redsmail @jjanisiobi @IanPrattMNDF @MNDANorWave @MNDa_Cheshire @MndaSouth @SussexMND @kingsmnd @MNDOxford @MNDManchester @WestMnd @MNDPatients @MNDEastLondon @MNDSandESom @ZoeTheBall https://t.co/17tphLCgI4 2/2

Please sign/share this petition. Let’s get 10000 to force government response. Patients with #mnd #als will die this winter if respiratory compromised if they don’t get the option to have free vaccination. We need to get mad & in-compassionate policy reversed. @wesstreeting

@MNDpatients are extremely vulnerable to Covid & need access to booster to protect against infection. Thanks @BBCSurrey for coverage c8:05 today. Pls sign https://t.co/uo1FUmB7om https://t.co/17tphLCgI4 Thank you @united2endmnd @MarkNormanNews @liampdwyer @cv_cev @_Chris_Coghlan

Please support this UK government petition to reinstate automatic qualification for Covid boosters for #mnd #als and other clinically at risk patients. @UKMNDRI @mndassoc @MNDoddie5 https://t.co/kDfirjHt36

Please support this UK government petition to reinstate automatic qualification for Covid boosters for #mnd #als and other clinically at risk patients. @UKMNDRI @mndassoc @MNDoddie5 https://t.co/kDfirjHt36

Interim measures are needed @karinsmyth. The drug is being supplied free by @biogen to some appropriate @MNDPatients Remaining c20 desperately need this to extend their lives with their loved ones. Please allocate necessary resources ASAP @burrow_geoff @edslater @DarbyRimmerMND

Good to see overseas pharma bringing its novel drug with good preclinical evidence to UK's innovative drug screening platform, @EXPERTS_ALS, which aims to drastically reduce the time taken for Phase 2 trials. https://t.co/PAkgwxzwXr @UKMNDRI @MNDOxford @neuroshef @NatureNeuro

This is a tragic story, because, at 14 years old, Kyle is almost certainly the youngest person living with #MND in the UK. Please help him find temporary accessible housing by signing the petition! @MNDPatients https://t.co/1XEzSCrjTc via @UKChange @edslater @DarbyRimmerMND

Very good to see @mndassoc rolling out its @mndresearch nurse programme. @MNDPatients @UKMNDRI @kingsmnd @neuroshef @MNDOxford @JNewton_MND

Today is #MNDAwarenessDay, a moment to highlight the hidden realities of living with #MND. Our translational research projects aim to find treatments for MND through a national, coordinated approach. 👉 Discover more:

Please "Prescribe Life" for Seckin & other @MNDpatients with SOD1 gene mutation on #MNDglobalawarenessday by signing this petition https://t.co/4O2THW7En6 @DarbyRimmerMND @edslater @burrow_geoff @CharlotteHawkns @Redsmail @LynnPritchatt @cris_hoskin @eleanor_dalley

Your chance to have your say on how @mndassoc uses donors' funds to support @MNDresearch https://t.co/Sivk79r5J8 Please give it a go & make sure your voice is heard. Please share.

@JoanneD_ @UKMNDRI @mndassoc @MNDPatients @MNDRegister @mndcampaigns @APPGonMND @IanByrneMP @AphraBrandreth @alexwardfund When data is integrated with @DementiasUK @HDR_UK @UKMNDRI initiatives funded by @united2endmnd campaign with @mndassoc @MNDScotland @MNDoddie5 @lifearc, @mndresearch scientists will have powerful weapon to speed up progress to new treatments & a cure 2/2