Tim Atkinson

Urge your MP to attend our next APPG meeting on 12 November Urge your MP to attend our next APPG meeting on 12 November The All-Party Parliamentary Group (APPG) on MND is a group of MPs and Peers from different parties, who work together to make sure the Gover...

Our upcoming All-Party Parliamentary Group (APPG) on #MND is coming up this November!

Your MP can attend to hear about our upcoming campaign and other updates.

Please email your MP and ask them to attend by clicking here: act.mndassociation.org/2025-11-APPG

Lewis Moody: Former England captain reveals motor neurone disease diagnosis Former England captain Lewis Moody reveals he has been diagnosed with motor neurone disease in an exclusive BBC interview.

We must find an effective treatment for #ALS #MND

@ukmndri.bsky.social

BBC News - Former England captain Moody reveals MND diagnosis
www.bbc.com/sport/rugby-...

Text reads: Now open! Accepting applications for biomedical research projects. Deadline: 31 October 2025

Applications for our Biomedical Research Projects are open. 🔬🧪
Apply if you have an idea which could advance our understanding of #MND #ALS and help find effective treatments!
📆 Deadline: 31 October
More info: www.mndassociation.org/research/for...

Thank you for your support and a great article Shaun.

MND patients fighting for a treatment for the disease denied because of hospital capacity is truly scandalous. Sadly this won't help my mum but the NHS can and must do better for these families: t.co/9qQPs2qxqs

Heard about how genetic testing and counselling is key to unlocking the future of precision medicine for people with #MND @mndassoc.bsky.social

Tell us your views on MND research Please take the time to complete our survey. Your feedback is important.

We've published our new organisational strategy, which has renewed our commitment to research.

Now we want to hear from #MND #ALS researchers 🔬

Please complete this survey to tell us more about your views 👇
www.smartsurvey.co.uk/s/EOLHKG/

Thank you 💙🧡

The number of people providing 35 hours or more a week of unpaid care increased from 1.1 million in 2003/04 to 1.9 million in 2023/24.

New requests for support increased from 1.8 million in 2015/16 to 2.1 million in 2023/24, mainly from working age adults www.independent.co.uk/news/health/...

Calendar of events Here is a comprehensive list of the education events and opportunities that will support your continuous professional development - from webinars to conferences.

We look forward to our last Information & Knowledge Exchange of 2025 on 23/09

Join Psychologist Dr Emma Bishop & MND Nurse Michaela Waltho to explore practical strategies to manage cognitive changes in #MND with fellow members of the Community of Practice

Book on mndassociation.org/education-ev...

🗣️"The waiting list for a new-build wheelchair accessible home is currently 40 years.

If you don't live in an accessible home as a Disabled person, it's a dangerous home, and a dangerous home you could be living in for 40 years."

DR UK's Mikey speaking to The Housing Select Committee 👇

🏠Accessible Homes Week Webinar!

Join Habinteg and CAE for this free webinar sharing the latest insights into England's plans for accessible homes - and a discussion about the inequality still rife in housing.

Sign up here👇
www.eventbrite.co.uk/e/forecast-f...

New league tables of limited use to patients Thea Stein responds to the introduction of quarterly rankings for all NHS trusts in England.

Read our full response to the publication of new league tables for NHS trusts in England 👇

Great - thank you :)

The @mndassoc.bsky.social would really like to hear from anyone who has:

- received a Disabled Facilities Grant (DFG) for major adaptations to their home in the last two years
- but, found that the grant did not meet the full costs.

Please email me at tim.atkinson@mndassociation.org - thanks!

Thanks Ammar! Is this the one the Institute did a news story on earlier this week?

Invite your MP to meet us this autumn This autumn we’ll be at the Conservative, Labour and Liberal Democrat party conferences. It’s an unmissable opportunity to put MND at the forefront of MPs’ minds, at the year’s most important gatherin...

I've asked my MP to meet with the MND Association (@mndassoc.bsky.social) this autumn, to discuss how they can help constituents living with #MND in my local area. Can you take 1 minute to email your MP too?👇

act.mndassociation.org/2025-autumn-...

Invite your MP to meet us this autumn This autumn we’ll be at the Conservative, Labour and Liberal Democrat party conferences. It’s an unmissable opportunity to put MND at the forefront of MPs’ minds, at the year’s most important gatherin...

I've asked my MP to meet with the MND Association (@mndassoc.bsky.social) this autumn, to discuss how they can help constituents living with #MND in my local area. Can you take 1 minute to email your MP too?👇

act.mndassociation.org/2025-autumn-...

Text reads: Beat the price rise! 36th International Symposium on ALS/MND

Join us at the largest scientific and medical conference dedicated to #MND #ALS!

🌍 San Diego, USA and Online
📆 5-7 December 2025
🐤 Early bird registration closes 5 September!

Register today: symposium.mndassociation.org/register/
#alsmndsymp

The clock is ticking!⏰

Book before 31 August to access our EARLYBIRD rate for the 2025 Community of Practice Annual Event

Held on 7 October in Birmingham, the day will focus on how HSCPs can support choice & control for people with #MND

Learn more on www.mndassociation.org/education-events

I am proud to support @mndassoc.bsky.social and their #PrescribeLife campaign.

Some people with SOD1 #MND, 2% of cases, still can't access tofersen and I am backing calls for the Government to find a solution.

You can learn more about the campaign here:
www.mndassociation.org/get-involved...

Thank you to everyone who joined the #ShowUsYouCare campaign and shared with MPs the importance of good quality, reliable social care.

Wondering if your MP was there? Check our list to find out: careandsupportalliance.com/parliament-2...

Photo of Emily, CSA Co-Chair, speaking into a microphone.

Emily Holzhausen, CSA Co-Chair, said: “MPs – your voice really matters to us. We want you to hold decision makers to account and work with us to secure a better future for social care. Investing in care is investing in all of us”. (4/5)

Photo of Jack, who uses an electric wheelchair, speaking into a microphone.

Jack, who receives social care, said: “The less care I get, the less independent I am. There's a real lack of aspiration for what a good life is for someone with a disability. We need a well-funded, needs-led care system that moves from enabling mere survival to fulfilling lives.” (3/5)

Photo of Anna Dixon MP speaking into a microphone.

We heard from @annadixonmp.bsky.social‬ : “We must build political consensus on social care, and raise public awareness of how important care and support is. People who draw on and provide care are too often invisible. We have to change that and celebrate the value of care and support.” (2/5)

Photo of a group of people holding signs that say 'I care!' There is an MP, two working age adults in wheelchairs, and several unpaid carers.

Yesterday, thanks to over 2000 campaigners who sent invitations, we welcomed MPs to our #ShowUsYouCare event in Parliament. Our attendees heard about the 3.5 million people unable to get the support they need and how we can work together to change this. (1/5)

Tell us your views on MND research Please take the time to complete our survey. Your feedback is important.

@mndassoc.bsky.social recently published our new organisational strategy, which has renewed our commitment to research.

Now we want to hear from #MND #ALS researchers 🔬

Please complete this survey to tell us more about your views 👇
www.smartsurvey.co.uk/s/EOLHKG/

Thank you 💙🧡

Bedford man launches 900-mile fundraising ride in memory of wife lost to MND - Bedford Independent A Bedford man in his 80s is supporting an extraordinary cycling challenge this August in memory of his wife Jenny, who died from MND...

A team of eight – many of them in their 60s – are riding the 900-mile route in aid of the Bedfordshire MND Group…

#Bedford #BedfordNews #Charity #MND #MotorNeuroneDisease #BikeRide

🧠 The #LongitudePrizeOnALS is now live!

This £7.5M global challenge invites innovators across #biotech, #AI, #data science & beyond to help accelerate #ALS treatment discovery.

Join us in bringing AI to the fight against ALS.

Learn more: bit.ly/4kD3tSh
#LPALS #MND

#PPW2025: building a fairer NHS through patient power Our Chief Executive, Rachel Power, shares why Patient Partnership Week 2025 matters now more than ever and how patient power must be central to the 10-Year Health Plan.

@rachel-p.bsky.social‬ shares why this year’s Patient Partnership Week couldn’t come at a more critical time. With a new government in place and the 10-Year Health Plan expected soon, we’re making the case for genuine partnership with patients to shape the future of health and care: buff.ly/ZN3yZ30

Programme of workshop with the logos of the MND Association and resources for health and social care professionals 9.15-9.20 Introduction to the day -aims and objectives 9.20-10 Respiratory deterioration in MND 10-11 Respiratory assessment-including sleep studies 11.15-12 NIV theory 12-1 NIV practical: overview of different ventilators, modes and settings, interfaces and tracheostomy (brief) 1.30-2 Pharmacological management of secretions: why are secretions an issue (impaired cough/swallow etc), assessment of respiratory secretions, use of medication to manage respiratory secretions (mucolytics, anticholinergic, Botox) 2-2.30 Cough augmentation 2.40-3.10 Cough augmentation-practical: you will be led through equipment which might be used with people living with MND to assist with cough augmentation 3.10-3.50 Case studies and panel discussions: value of continued reassessment over time, review of patient needs and wishes, withdrawal of mechanical ventilation 3.50-4 Evaluations and close

Last day to register!

Join us for a day exploring the theory and practice of respiratory management in #MND with subject experts and fellow HSCPs

The workshop is CPD-accredited and endorsed by
@silvah-uk.bsky.social

Book now!
bit.ly/respiratory-...