Patients United2EndMND

We are a group of patients, working to support the drive for a cure for MND.

[Patients United2EndMND @united2endmnd]

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

[Patients United2EndMND @united2endmnd]

Including our published Brain journal paper. (3/3)

https://t.co/uEAQJp5p0s

[Patients United2EndMND @united2endmnd]

The UK MND Research Institute was the result of #United2EndMND funding campaign in 2021. Bringing together leading research centres from all over UK to implement National Strategy for translational MND research along with vital infrastructure (1/3)

https://t.co/oBra82SpTY

[Patients United2EndMND @united2endmnd]

You can read all about the campaign and the unique coalition of patients, researchers, major charities, industry and government on the #United2EndMND website
https://t.co/B39fvEPjZX (2/3)

[UK MND Research Institute @UKMNDRI]

Traditional clinical trials are essential, but for people with #MND, years of waiting isn't an option.

@EXPERTS_ALS uses short-term biomarker studies to identify promising treatments faster. Take a look at the first wave of drugs entering the platform.

https://t.co/YkAgAjQw4Q

[Patients United2EndMND @united2endmnd]

@UKMNDRI's early achievements e.g globally recognised @EXPERTS_ALS drug screening platform, @MNDRegister, bio-banking & fostering a collaborative UK @mndresearch environment have laid strong foundations. Now, sustained, disciplined improvement is vital https://t.co/JgFq24aBjK

[David Setters @dsetters]

A great opportunity for @MNDPatients to influence how research is conducted. Please do have a read and take advantage of the opportunity if you can.

[MND Association @mndassoc]

Are you an early‑career MND researcher?

Applications are now open for our annual MND EnCouRage event — apply by 30 March for the chance to share your work with the MND community, fellow researchers and leading professionals.

📍 Loughborough
📆 14-15 July

[Lee Millard @onein300]

It’s now been 6 long weeks since @blandy_r Dr Rachel Jakeman handed in her open letter to @Keir_Starmer @wesstreeting about the inequity of tofersen access for SOD1 #mnd #als. What’s happening?

https://t.co/CmCwUW8ZYh

[Lee Millard @onein300]

Much needed global initiative. Thank you @alscanada. Weak drug candidates/repeated failure have marked #als #mnd research for more than a decade.

Scientific scrutiny MUST be the priority in our disease.

Any #als researcher, esp early career scientists, would benefit from event.

[David Setters @dsetters]

Good to see this new support for accessing #tofersen from @mndassoc https://t.co/TDTzn2eJJi. Now let's see charities, patients/families & neurologists working together on sharing data & improving access @united2endmnd @MNDPatients @UK_mnd_CSG @UKMNDRI @MNDoddie5 @kingsmnd

[UK MND Research Institute @UKMNDRI]

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

[Lee Millard @onein300]

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

[UK MND Research Institute @UKMNDRI]

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

[Patients United2EndMND @united2endmnd]

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

[Patients United2EndMND @united2endmnd]

@kingsmnd @IanByrneMP @AphraBrandreth @DarbyRimmerMND @burrow_geoff @edslater @MNDA_Glos @MNDA_WestYorks @MNDA_Merseyside @MNDManchester @MNDa_Cheshire @MNDACheshire Please share.

[David Setters @dsetters]

@BBCBreakfast @ClaireRyanBBC @BBCFrediani Thanks for coverage of flu vaccine today. Vital for "cynically extremely vulnerable". But why no automatic access to #Covid vaccine this year for @MNDpatients & others? https://t.co/CBu1DlhSRB
https://t.co/17tphLCgI4 @_Chris_Coghlan

[Lee Millard @onein300]

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

[Lee Millard @onein300]

#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

[David Setters @dsetters]

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

[David Setters @dsetters]

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

[Patients United2EndMND @united2endmnd]

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

[David Setters @dsetters]

@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