MNDA SE Wales @SEWalesMND
We provide advice and support to people living with MND and their families in SE Wales. We also fundraise towards national research, to find a cure for MND. SE Wales Joined May 2013-
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Welcome to the April issue of our Branch newsletter. We hope that you enjoy reading it to find out more about what we do, how our fundraisers support us and how we use our funds to help the MND Community. facebook.com/share/xbYD85sf…
Heading out for my first day in my new job, as director of engagement for @mndassoc. It’s such an important cause, and I can’t wait to get started!
Time to get out your best china, it's #NationalTeaDay! While you're waiting for the kettle to boil, why not sign up to host a tea party to raise money for families affected by MND? Find out more below ☕
Truly brilliant - every single runner in the #londonmarathon2024 today. A special thank you to the fantastic @mndassoc team runners - the grit, determination, passion and drive from every single person, we’re so grateful and beyond proud 🧡💙
📣 Participants needed! 📣 Researchers @KingsCollegeLon have designed a new online intervention to help people with long-term physical health conditions, such as #MND #ALS, to help manage low mood and depressive symptoms. They want your thoughts ⬇️ mndassociation.org/research/get-i…
Tofersen is an effective therapy for the 2% of people with #ALS #MND who carry a genetic variation in their SOD1 gene. Whether it is available in the UK depends on a cost threshold and assessment by @NICEComms. The system is outdated: theguardian.com/society/2024/a… @UKMNDRI @mndassoc
@southwalesargus please repost
Mamma Mia Movie Matinee for MND - 21st June, Market Hall Cinema, Brynmawr. Details in poster. If you can’t come, but would still like to donate, please do so via: justgiving.com/page/mammamiaf…
On MND Global Awareness Day we are having a Mamma Mia Movie Matinee for MND at @MarketCinema Brynmawr. Please join us there!
Over the weekend @Tanyacurry2 and @eleanor_dalley spoke to the @Daily_Express about the disappointing decision taken by @NICEComms on tofersen. You can read the full story below 👇
Introducing a brand new event to our event portfolio: Cardiff Bay 10k! 📅 19 May 2024 📍 Cardiff 💷 £10 reg fee + £125 fundraising pledge Secure your spot now, places are limited!
@NICEComms MUST review their decision. Experts disagree, patients disagree. @GOVUK want country to be leaders in research but this is a step backwards. Personalised medicine is gaining momentum & we aren’t keeping pace. Another kick in the teeth for MND community #listenplease
@NICEComms MUST review their decision. Experts disagree, patients disagree. @GOVUK want country to be leaders in research but this is a step backwards. Personalised medicine is gaining momentum & we aren’t keeping pace. Another kick in the teeth for MND community #listenplease
In case you missed it... the deadline is approaching for trustee nominations. Find out more below 👇
In case you missed it... the deadline is approaching for trustee nominations. Find out more below 👇
Over the weekend @Tanyacurry2 and @eleanor_dalley spoke to the @Daily_Express about the disappointing decision taken by @NICEComms on tofersen. Tofersen is a proven, effective treatment for people with #MND who have the SOD1 gene alteration. express.co.uk/news/uk/188339…
@ALCTillerySt1 @mndassoc Thank you so much Abertillery Learning Community for fundraising for the @mndassoc . Your fundraising and awareness raising is much appreciated. Well done everyone!
Her Royal Highness was joined by Rob Burrow, the former @England_RL and @leedsrhinos player who was diagnosed with MND in 2019. Rob, along with his teammate Kevin Sinfield, has fundraised for MND research and increased public awareness of this incurable condition. 📷 Dominic…
Condolences to John’s family and friends. A true MND warrior - full of spirit, inspirational and with an incredible sense of humour. RIP John.
Condolences to John’s family and friends. A true MND warrior - full of spirit, inspirational and with an incredible sense of humour. RIP John.
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
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.
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!
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.
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
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?
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 Assoc VIP & Event.. @mndVIPteam
5K Followers 2K Following News and information about VIP support and special event activity for the Motor Neurone Disease Association (@mndassoc).
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.
Davina Rivers @DavinaRivers
3K Followers 5K Following My beloved Eric lived, loved,inspired, died from #MND 07/11/2015 aged 49. Widow navigating all things grief, solo parenting with 3 remarkable young daughters.
MND Scotland @MNDScotland
8K Followers 2K Following Making time count for people with motor neuron disease (MND).
MND Education @mndeducation
3K Followers 2K Following The Education and Information team at the Motor Neurone Disease Association for England, Wales and Northern Ireland. Account monitored 9-5.30 Monday to Friday.
MotorNeuroneDisease @MNDPatients
4K Followers 3K Following Set up to help, advise & support people affected by #MND #ALS Ideas & suggestions welcome from everyone #NoCause #NoCure
Chris James (he/him) @ChrisJamesMND
2K Followers 814 Following Director of External Affairs at the Motor Neurone Disease Association @mndassoc.
Jordan @AnnmarieMND
585 Followers 890 Following Fighting to find a cure for Motor Nerones Disease! https://t.co/aOnxCOQQXK
Chris McDermott @profcjmcdermott
1K Followers 496 Following Professor of Translational Neurology, SITraN, University of Sheffield. Co-Director, Sheffield MND Care and Research Centre. #MND #ALS Specialist
Katy Styles @WillowKaty
3K Followers 5K Following #UnpaidCarer to @markrstyles who lives with Kennedy's Disease #MND Created @WeAreCarers Campaign to #ValueCarers
Karla Lavelli @karl_lavell
36 Followers 5K Following
Sandy Tuazon @STuazon71717
63 Followers 5K Following
Amanda Bourne @mandabourne
45 Followers 109 Following Community Fundraiser at the MND Association. Runner and PT
Eleanor 💋 @Eleanor_M73
6 Followers 451 Following Liberаtеd аnd pаssiоnate womаn craving рassionаtе connectiоns
Luna @Stella604013456
6 Followers 733 Following
marion kavanagh @marion2308xx
120 Followers 467 Following
Abertillery Learning .. @ALC3to16
436 Followers 120 Following Official Twitter account for Abertillery Learning Community. Check here for news and notifications.
ALC Tillery Street Ca.. @ALCTillerySt1
98 Followers 60 Following Tillery Street Campus - Lower School. Abertillery Learning Community 3-16.
. @Abimcooper
2 Followers 38 Following
150MND @150mnd
115 Followers 371 Following we are a team of friends aiming to raise £150k by walking 150 miles inspired by our great friend Rob who was recently diagnosed with MND. A Big Rugby fan
Carmen Brown @MND_CarmenBrown
413 Followers 1K Following Community Fundraiser at the MND Association
Dr. Eleanor Wilson @DrElliWilson
581 Followers 759 Following Dr. Elli Wilson - Anne McLaren Research Fellow, NCARE, School of Health Sciences, University of Nottingham. UK. Quals, palliative+end of life Views are my own
Maggie's Cardiff @maggiescardiff
2K Followers 2K Following We are here for anyone living with cancer, and their family and friends, across South East Wales. For cancer support or general enquires call 029 2240 8024
Charity Collector @CharityCollectr
184 Followers 834 Following
My MND Mates @MyMNDMates
43 Followers 105 Following An online community for those living with MND/ALS. We’re passionate in raising vital awareness of those diagnosed in the younger generations.
Donald Lye @DonaldL71399
8 Followers 87 Following Publisher offering existing reward contests and exclusive offers.Stay tuned for the latest updates on our amazing giveaway and opportunities.
A View From My Camera @ViewFromCamera
2K Followers 1K Following Supporter of @MNDoddie5 @njrchfoundation : cycling / photography / cold water / MND / Doddie Champion / Batten Disease #aviewfrommycamera
Jennie Starkey @StarkeyJennie
480 Followers 322 Following Mum of 4, educator, PhD student, diagnosed with MND Sept 2021. recently retired. Raising MND awareness through humour (sometimes dark) with my blog.
Jim Swank @JimSwank18
196 Followers 690 Following
GreyCurmudgeon @greycurmudgeon
4K Followers 4K Following Motor Neurone Disease (MND) sufferer. Never trusts MSM so don't use them. Mostly prefer dogs to people. They're more honest & often more intelligent.
Kimberley Cowen @Kimberley_Cowen
99 Followers 156 Following Mum, Wife, Daughter, Sister, Aunt, Great Aunt, Cousin, Grandaughter, Friend and Colleague = excellent relationship management skills ;-)
AC Coaching & Sports .. @ACCoaching1
1K Followers 3K Following AC Coaching & Sports Development Limited @CoachCaron1977 #tutor #educator #coach #athlete #author #specker #walkingsports #disabiltysport #lovelearnteachcoach
Shuseson @shuseson13439
5 Followers 447 Following Gods determine what you're going to be。Contact me Telegram number:
Tenoseyst @tenoseyst36086
19 Followers 392 Following Gods determine what you're going to be。Contact me Telegram number:
EndMND @EndMND
37 Followers 41 Following Fighting Motor Neurone Disease Through Fashion. 100% of profits donated to the Motor Neurone Disease Association.
Prof.Dr İdrisoglu @HAidrisoglu
259 Followers 3K Following
Sarah @ftt1845pvd
14 Followers 543 Following 30 something single but not lonely | meet something & someone new & new me & new profile | https://t.co/af9YJGSAEz | she/her
thais sobanski @thais_sobanski
3 Followers 29 Following
SiHallas @SimonHallas2
347 Followers 2K Following Fundraising for MND. walking 100km in 1 day to raise money and awareness. Hull FC fanatic and Views are my own.
HFH Healthcare @HFHHealthcare
169 Followers 688 Following We provide specialist nurse-led #complexcare for adults and children across London and the home counties, delivered in the comfort of their own homes.
Liz Groundland @LizGroundland
521 Followers 880 Following Love my Family, Passionate Commitee member of @MNDManchester and fan of @Mancity. My views are my own.
anna barrow @anbar1
75 Followers 303 Following Mum, Wife, recently retired social worker, living with MND
Anna4Labour @anna4labour
3K Followers 4K Following PCC candidate. Coleridge cllr. Deputy Mayor @CambsPboroCA. Former leader @camcitco. Views own. Promoted by David Jermy, Alex Wood Hall, Cambridge, CB1 2LD
Zac Mayers Corrie @ZacM_Corrie
34 Followers 383 Following The sexy #Corrie plumber! 🏳️🌈 FAN PAGE 🏳️🌈 Ex of @PaulForeman56 @itvcorrie
Caroline Bidder @CarolineBi9952
17 Followers 48 Following
marypoppins @marypop58573516
22 Followers 161 Following
Debbie alnajjar @AlnajjarDebbie
3 Followers 46 Following
Pat P-HomesickForMyse.. @Ppoole04Pat
205 Followers 839 Following MS warrior, socialist, cat mama, lifelong union member, #proudoutlandercheerleader - now working f/t at Ropey, Wrung Out & Co. Oh, and a proud Remainer 🇪🇺🇪🇺
Becky Mears @Bec_Mears_SLT
341 Followers 528 Following Working to improve community SLT services to patients. Interests, prog neuro, general oncology, palliative care, mental capacity/decision making. Own views
Ulster University Sta.. @UlsterSDN
327 Followers 450 Following We promote inclusion, equality & diversity. We seek to disseminate a range of information which may be of interest to the network. Retweets not an endorsement.
Janice JC Chappell @janicechappell
1K Followers 2K Following
Mind Over MND. @mindovermnd
114 Followers 171 Following
MND Association @mndassoc
48K Followers 13K Following Our vision is a 🌎 free from 𝐦𝐨𝐭𝐨𝐫 𝐧𝐞𝐮𝐫𝐨𝐧𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 #MND
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
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.
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.
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.
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
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?
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
Brian Wallach @bsw5020
159K Followers 3K Following Dad, husband, activist, entrepreneur, unlikely movie star, living with ALS, a currently fatal disease.
MND Assoc VIP & Event.. @mndVIPteam
5K Followers 2K Following News and information about VIP support and special event activity for the Motor Neurone Disease Association (@mndassoc).
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.
Brian Dickie @DrBrianDickie
2K Followers 293 Following Director of Research at the UK MND Association
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 👍👊🤞
Darby Rimmer MND Foun.. @DarbyRimmerMND
11K Followers 118 Following Email: [email protected] Website: https://t.co/k7QNaUrRlJ Instagram: darbyrimmermnd #AttackMND
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
Davina Rivers @DavinaRivers
3K Followers 5K Following My beloved Eric lived, loved,inspired, died from #MND 07/11/2015 aged 49. Widow navigating all things grief, solo parenting with 3 remarkable young daughters.
Able Radio @RadioAble
3 Followers 89 Following
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.
UK Dementia Research .. @UKDRI
13K Followers 1K Following New scientific discoveries, new hope to stop dementia. Founding funders: @The_MRC @alzheimerssoc @AlzResearchUK
R4W 🏃🏴�.. @Run4Wales
6K Followers 2K Following The 🏠 of R4W events, campaigns, training & more. Cymrwch rhan! 👇
ALC Tillery Street Ca.. @ALCTillerySt1
98 Followers 60 Following Tillery Street Campus - Lower School. Abertillery Learning Community 3-16.
Abertillery Learning .. @ALC3to16
436 Followers 120 Following Official Twitter account for Abertillery Learning Community. Check here for news and notifications.
EndTheLegacy @End_The_Legacy
329 Followers 65 Following Patient led organization providing education and support , and advocating for, those impacted by Genetic ALS and FTD.
Liz Groundland @LizGroundland
521 Followers 880 Following Love my Family, Passionate Commitee member of @MNDManchester and fan of @Mancity. My views are my own.
Caroline Lee @Caroline18Lee
266 Followers 514 Following Mum to 5 amazing children, step mum to 4 more 😊 Fundraiser for MNDA 💙
A View From My Camera @ViewFromCamera
2K Followers 1K Following Supporter of @MNDoddie5 @njrchfoundation : cycling / photography / cold water / MND / Doddie Champion / Batten Disease #aviewfrommycamera
Jennie Starkey @StarkeyJennie
480 Followers 322 Following Mum of 4, educator, PhD student, diagnosed with MND Sept 2021. recently retired. Raising MND awareness through humour (sometimes dark) with my blog.
Patients United2EndMN.. @united2endmnd
473 Followers 74 Following We are a group of patients, working to support the drive for a cure for MND.
Rachel @rachel_MND
317 Followers 688 Following East Midlands Area Support Coordinator for @mndassoc interested in Health Psychology, Forest Bathing, carers support & volunteering
Aaron Boster MD @AaronBosterMD
13K Followers 122 Following MS Neurologist & Spasticity Doc. Founder of The Boster Center For Multiple Sclerosis, https://t.co/EoJjH5eoVz. He/Him. Tweets ≠ medical advice. 🏳️⚧️🏳️🌈
MGH Neurology @MGHNeurology
8K Followers 741 Following On a mission to find new treatments and cures to eliminate the devastating impact of neurological disorders.
Chris McDermott @profcjmcdermott
1K Followers 496 Following Professor of Translational Neurology, SITraN, University of Sheffield. Co-Director, Sheffield MND Care and Research Centre. #MND #ALS Specialist
Rachel Brown @MND_CommsAids
236 Followers 224 Following MND Association Communication Aids Coordinator. All views are my own
James Clarke @Clarkiejc1979
399 Followers 218 Following Fighting hard against MND insta: jamesclarke_kf
Mind Over MND. @mindovermnd
114 Followers 171 Following
James - Diagnosed Dad @diagnosed_dad
583 Followers 157 Following 👋🏻 A Dad living & dealing with MND/ALS
Janice JC Chappell @janicechappell
1K Followers 2K Following
Tim Atkinson @TimJAtkinsonMND
485 Followers 831 Following @mndassoc National Campaigns Manager Interested in activism, #volunteering, charities, community organising, and health and social care.
Niall @NiallMurphy_
237 Followers 539 Following Senior Campaigns Advisor at @MNDassoc | Interested in social & environmental justice & Geopolitics 🌈 | @royalholloway @RHULGeography alumnus |
Rachel Young @rachelyoung1909
38 Followers 131 Following
Cllr Trevor Watkins @CllrTWatkins
40 Followers 33 Following Labour councillor proudly representing Tredegar Park and Marshfield Ward on Newport City Council - Views are my own
StampOutMND @StampOutMnd
315 Followers 1K Following Charity Fundraiser For The Motor Neurone Disease Association since 2015
Steve Barclay @SteveBarclay
61K Followers 738 Following MP for North East Cambridgeshire, Secretary of State for Environment, Food & Rural Affairs. Promoted by Steve Barclay of MJS House, Wisbech Road, PE15 0BA.
Millie Jenkins @MillieJenkinss
289 Followers 382 Following Associate Consultant in the Health Team at Portland Communications. Previously at the MND Association. All views are my own.
Clare-Anne Magee @forummum
1K Followers 1K Following Head of Regional Care Partnerships- devolved nations MND Association and mum of 2
Sarah Roscoe @Sarah_Roscoe_
188 Followers 124 Following Post-doctoral research associate investigating nutritional assessment and metabolism at SITraN, The University of Sheffield.
Nicholas Cole @nickjamescole
479 Followers 182 Following Head of Research for The MND Association. MND ALS Research Scientist, Research Group Leader, Adjunct Research Fellow, Kitesurfer, Husband, Dad.
Heather Marriott @HevMarriott
266 Followers 371 Following Postdoc in Translational Bioinformatics of ALS/MND @kingsmnd 🧠 | @mndassoc and @MNDScotland Pre-Fellow | All views are my own. she/they 🌈
Leon Crowley @leoncrowley_
33 Followers 38 Following PhD student at King’s College London. Researching the role of TDP-43 in ALS/FTD.
Fairwater AFC / Melan.. @fairwaterAFC
844 Followers 563 Following 2014 - 2020 ❤️🖤 Division 2 runners up/Villa dino plate winners 2014/15. Now the Melanie XI which play annually to raise money for the MND association
Abertillery Rotary @RotaryAber
864 Followers 554 Following Abertillery and Blaina Rotary Club members are enthusiastic, fun loving and active volunteers who are champions for the community in which they live and work.
Charissa @CKB_88
147 Followers 641 Following Hospice Neurology nurse who specialises in MND, PSP, CBS and MSA | Sporadic Twitter user | Views are my own ☕️💫
MND Navigate @MndNavigate
337 Followers 261 Following Diagnosed with MND 2019. Sharing my journey with MND to hopefully inspire others to live strong and with positivity-Also founder of MND Elite -views are my own
COMMEND Project @CommendProject
279 Followers 153 Following Adapting and evaluating Acceptance and Commitment Therapy (ACT) for improving quality of life in people with Motor Neurone Disease
End ALS Now @EndALSNow
953 Followers 932 Following ▪Bri ▪I mainly amplify #ALS tweets ▪ALS=wretched, cruel, 100% fatal ▪RT=awareness, not agreement ▪🚫DMs🚫 ▪#EndALS ▪#SunflowerForSandy 🌻 ▪#RoseForJamie 🌹
Alli Anthony @AlliAnthony2
150 Followers 218 Following Proud to be working for the Motor Neurone Disease Association
Liz Liversidge @LiversidgeLiz
2K Followers 5K Following Mother, wife, Social Worker. Love life. Married to @LiversidgeJason, the most inspirational person I know, fighting #MND & #FabryDisease #DIYSOS family.Heading out for my first day in my new job, as director of engagement for @mndassoc. It’s such an important cause, and I can’t wait to get started!
Not long to go now until the Doddie Duck Race at Dalkeith Country Park 🦆 We'd love to see you there. Tickets available below 👇 dalkeithcountrypark.co.uk/event/doddie-d…
James Clarke, a warrior and a good man. RIP. #MND #ALS
We're sad to hear of the death of James Clarke & our thoughts are with his friends & family. James was a great supporter of ours & a Doddie Champion too. His efforts to drive MND research were tireless & he accomplished a huge amount. Full statement: myname5doddie.co.uk/whats-on/artic…
@Leanne_Hawker Thank you so much for coming to support this event again. Always lovely to see you 🧡🤍💙
@southwalesargus please repost
@mediawalescu please repost
@RadioAble please repost
Massive congrats to my big bro for running the @LondonMarathon for the second year in a row for @mndassoc! Super proud 🥰👏👏👏
Time to get out your best china, it's #NationalTeaDay! While you're waiting for the kettle to boil, why not sign up to host a tea party to raise money for families affected by MND? Find out more below ☕
Truly brilliant - every single runner in the #londonmarathon2024 today. A special thank you to the fantastic @mndassoc team runners - the grit, determination, passion and drive from every single person, we’re so grateful and beyond proud 🧡💙
Massive cheers for @StandAgainstMND founder, Sam Perkins, for completing @LondonMarathon 🧡
On MND Global Awareness Day we are having a Mamma Mia Movie Matinee for MND at @MarketCinema Brynmawr. Please join us there!
📣 Participants needed! 📣 Researchers @KingsCollegeLon have designed a new online intervention to help people with long-term physical health conditions, such as #MND #ALS, to help manage low mood and depressive symptoms. They want your thoughts ⬇️ mndassociation.org/research/get-i…
Some great news to round off the week - Doddie Aid has now officially raised over £5 million 🍾 When Rob Wainwright kicked off a virtual exercise challenge in the depths of lockdown 2020, who would've known it would've hit these heights?! Full story 👇 heraldscotland.com/news/24246002.…
Tofersen is an effective therapy for the 2% of people with #ALS #MND who carry a genetic variation in their SOD1 gene. Whether it is available in the UK depends on a cost threshold and assessment by @NICEComms. The system is outdated: theguardian.com/society/2024/a… @UKMNDRI @mndassoc
Mamma Mia Movie Matinee for MND - 21st June, Market Hall Cinema, Brynmawr. Details in poster. If you can’t come, but would still like to donate, please do so via: justgiving.com/page/mammamiaf…
Thousands of unpaid carers are being forced to repay vast sums due to minor breaches of the Carer's Allowance rules. The #SupportMNDCarers campaign has long been calling for urgent reform of this benefit, particularly removing the limited eligibility rules.
Great-grandmother Kathleen recently celebrated her 100th birthday. Rather than asking for presents she received donations in memory of her son Michael who died of #MND 6 years ago. She received over £1000 in donations! A huge happy birthday to you Kathleen 💙
Over the weekend @Tanyacurry2 and @eleanor_dalley spoke to the @Daily_Express about the disappointing decision taken by @NICEComms on tofersen. You can read the full story below 👇
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