@MNDPatients

Set up to help, advise & support people affected by #MND #ALS Ideas & suggestions welcome from everyone #NoCause #NoCure

Joined January 2016
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  • Following3K
  • Followers3.3K
640Media
Up to date facts of Motor Neurone Disease. Every week in the #UK alone, 42 people die. A person's lifetime risk of developing MND is around 1 in 300. #NoCause #NoCure for #MND #ALS #EndALS #EndMND
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Vinyl Lionel@My1stRecordOct 22
My "MND Matinee-ation" has comprised of watching old eps of The Persuaders (1971-1972) and The Return of The Saint (1977-1978)...I have to say that in the former, the chemistry between Tony Curtis and Roger Moore is fab but sadly Ian Ogilvy is a poor man's Roger M! @MNDPatients
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BBC Breakfast
@BBCBreakfastOct 19
'Thank You Sir Kev' Sir Kevin Sinfield has raised more than £13m over 7 years for MND - Prince William leads the tributes in a special #BBCBreakfast documentary @BBCOne Monday 26th October at 8pm and @BBCiPlayer bbc.co.uk/programmes/m0033jm…
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Paul Hart@hartingibOct 20
Lyke Wake Walkers from back in 93 - work colleagues from Barclaycard Teesside. Can you pick me out reds? 🔴⚫️⚪️ @visitnorthyork @MNDPatients
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#Banstead Volunteer & Join! @InnerWheelGBI @MNDPatients @mndaeastsurrey @alzheimerssoc @MaryFrancesTrst @SunnybankEpsom @St_Raphs @SuttonCarers @Snwhomeless @BansteadMums @BansteadPrep @BansteadJunior @warrenmeadsch @aberdourschool @FriendsBeacon @SuttonWomen @TimeBanksOrg
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Very important! 👇🏼 Wholly agree @MNDPatients @UKMNDRI @lifearc1 @mndassoc @MNDoddie5
LifeArc@lifearc1Oct 15
Meaningful patient involvement in rare disease research doesn't happen by chance. It requires funding, infrastructure, recognition and commitment. Our new co-authored peer-reviewed commentary explored how PPIE can be embedded across the research pathway: t.ly/vggqd
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Well done 👏🏼 @UKMNDRI @MNDPatients
Associazione conSLAncio ETS@ConslancioOnlusOct 13
🧪🔬📊 🌎12 ottobre 2026: EXPERTS-ALS @UKMNDRI: Ropinirolo - Risultati dell'analisi intermedia 🔗🇮🇹tinyurl.com/43yx8r32 Il reclutamento continua per i bracci doxiciclina e salbutamolo dello studio. Grazie a tutti i partecipanti e ricercatori dello studio.❤️
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Emma_MacLennan@Emma_MacLennanOct 15
These are the huge benefits of collaboration, including working with @MNDPatients. 👏🏼 @UKMNDRI
UK MND Research Institute
@UKMNDRIOct 13
We believe no single lab or group can solve #MND alone. The MND Collaborative Partnership brought researchers from six UK universities together alongside people living with MND. Here’s what it delivered👇 ukmndri.org/2026/10/13/multi…

Multimillion-pound partnership breaks down barriers in MND research - UKMNDRI

Motor neuron disease (MND) is one of the most complex challenges in medical research. While excellent work is taking place across the globe, no single researcher or organisation can solve it alone....

ukmndri.org
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Sandra SmithMND@SandraSmithmndOct 12
Replying to @mndassoc
Unfortunately “time is not on the side of those living with #MND that could benefit from Tofersen” @MNDPatients #NiceComms really don’t understand #MND a small number of people would receive Tofersen . Decision March 2027 unacceptable @MNDPatients
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Sandra SmithMND@SandraSmithmndOct 11
We need to also raise awareness of #FTD and cognitive changes in #MND @mndassoc @mndresearch @MNDPatients
MND Association
@mndassocOct 11
Motor neurone disease, or MND, is fatal and rapidly progressing. Here are the facts.
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BBC Breakfast
@BBCBreakfastOct 7
Arise Sir Kev. Sir Kevin Sinfield has officially received his knighthood from Prince William in a ceremony at Windsor Castle. He was recognised for his career in rugby league and raising more than £13m for charities tackling motor neurone disease bbc.co.uk/news/videos/ckg4xn…
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Leeds Rhinos
@leedsrhinosOct 3
Getting ready to go Donate donate.giveasyoulive.com/fun… Tracker live.kongtracking.com/7IN7TG… Route therhinos.co.uk/the-club/sin…
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Sandra SmithMND@SandraSmithmndOct 2
Replying to @BrewDogStadium
Thank you St Helens Rugby Club for the support you gave to Sir Kev Sinfield. 7 in 7: The Grand Finale Great to have been on the terraces to welcome him over the finish line @MNDPatients @crf_leeds @leedsrhinos
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Sandra SmithMND@SandraSmithmndOct 2
Unless you have been affected by #MND you can never understand. Thank you Sir Kev for raising awareness @MNDPatients @DarbyRimmerMND @MNDoddie5
Leeds Rhinos
@leedsrhinosOct 2
Thank you @Saints1890 - 2,000 fans greet the 7 in 7 team to Brewdog Stadium Donate donate.giveasyoulive.com/fun…
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Sandra SmithMND@SandraSmithmndOct 2
Great to have been at @Saints1890 welcoming Sir Kev Sinfield & Team raising money for MNDA , Irish MNDA My Name'5 Doddie Foundation, MND Scotland, Leeds Hospitals Charity , The Darby Rimmer MND Foundation. @MNDPatients @DarbyRimmerMND @MNDoddie5
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Leeds Rhinos
@leedsrhinosOct 1
Wow! Just when you think you can not admire Sir Kev any more, he does this, 4 ultra marathons down, fifth day and then destroys this hill near Marsden Golf club, keep watching Donate donate.giveasyoulive.com/fun… Tracker live.kongtracking.com/7IN7TG… Route therhinos.co.uk/the-club/sin…
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Leeds Rhinos
@leedsrhinosOct 2
What a reception in St Helens Donate donate.giveasyoulive.com/fun… Tracker live.kongtracking.com/7IN7TG… Route therhinos.co.uk/the-club/sin…
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Leeds Rhinos
@leedsrhinosOct 2
Thank you @Saints1890 - 2,000 fans greet the 7 in 7 team to Brewdog Stadium Donate donate.giveasyoulive.com/fun…
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The Royal Family
@RoyalFamilySep 28
Wishing Sir Kevin Sinfield the very best of luck on 7️⃣ Ultra Marathons in 7️⃣ days, in support of the MND community and in memory of Rob Burrow CBE. The Princess Royal spent time with Kevin, as well as the brilliant MND Association staff, carers, families and supporters, who will join him on this remarkable journey. 💙
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Agents Giving
@Agents_GivingSep 25
What a fantastic sunny day we had at the @Agents_Giving Charity Golf Day at @MorleyHayes! ☀️⛳ It was wonderful to see everyone come together to raise funds in aid of @MNDPatients Congratulations to our winners: 🏆 1st place: @JustMoveIn_ 🥈 2nd place: Atlas Display 🥉 3rd place: Simplify ⭐ Best Single Player: Ben Greco of Simplify A huge thank you to all our sponsors, golfers and volunteers for making the day possible. Special thanks to our Headline Sponsor, @JustMoveIn_ , for their support, and congratulations on your win! agentsgiving.org/event/agent…
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Agents Giving
@Agents_GivingSep 24
IT’S GOLF DAY! ⛳️ Today we’re at the stunning @MorleyHayes for the @Agents_Giving Charity Golf Day! 🏌️‍♀️🏌️‍♂️ We’re delighted to welcome teams from across the property industry for a fantastic day of golf, networking, fun and, most importantly, fundraising. A huge thank you to our fantastic Headline Sponsor, @JustMoveIn_ , for their continued support, all the golfers and to everyone who has helped make today possible. We’ll be raising funds for @MNDPatients, so every swing, putt, raffle ticket and auction bid will help make a difference. Let’s make it a brilliant day! See more here of our fundraising day: agentsgiving.org/event/agent…
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