David Whalley

Area Support Coordinator for @mndassoc in the North East of England

#TeamMND #United2EndMND #MND

[Ammar Al-Chalabi @AmmarAlChalabi]

NICE has made the decision to treat tofersen, a specialised genetic therapy for a small subset of people with #ALS #MND developed in the UK, as a general therapy, condemning it to fail their assessment. We must change that decision.
Sign the petition:
https://t.co/QDPHHQsP9j

[MND Education @mndeducation]

We need your help!

University of Sheffield Researcher Claire Williams is seeking people living with #MND to feedback on a questionnaire measuring health-related quality of life (HRQoL) in people living with #MND.

You can take part by going to: https://t.co/5xLfgVWq0r

[MND Education @mndeducation]

Researchers at the University of Sheffield are seeking people with #MND to feedback on draft content for a questionnaire that looks at the impact of the MND on quality of life.
Find out more and sign up: https://t.co/L5y0MYL2VY

[MND Association @mndassoc]

We are seeking people living with SOD1 MND in the UK 📢

Clinical trial results for Tofersen show great promise. People have reported slower deterioration of their condition and, in some instances, their progression stopping altogether.

[David Whalley @DavidW_MND]

@LeighCoff22 @sunderlanduni @SunderlandUniSW Incredible, well done Leigh-Anne!!

[Richard Cave 🇺🇦 @speedoftrust27]

Really impressive free, open-source AI-driven AAC. Ossia Voice could help so many people with little/no speech and movement communicate more what they want rather than what the AAC lets them - in a faster, more authentic and accessible way.
pls shr thx
https://t.co/esrhtvJnvg

[David Whalley @DavidW_MND]

@LeighCoff22 @sunderlanduni @SunderlandUniSW Well Done Leigh-Anne!!

[David Whalley @DavidW_MND]

Think it just reiterated how much admiration there is for what @Rob7Burrow did for the MND Community.

His family must have been so proud.

[David Whalley @DavidW_MND]

Thought the coverage from @SkySports last night was amazing for @mndassoc #GlobalMNDAwarenessDay - thank you so much to @leedsrhinos too

It was also amazing to see @alanshearer offering support too...you're welcome to our @MNDTyneAndWear support meeting any time!

[MND Association @mndassoc]

We'd like to acknowledge the deep frustration within the #MND community around the ongoing wait for the publication of the MIROCALS trial results.

We share that frustration.

Read our MIROCALS statement here: https://t.co/Iw1LpB6CNw

[MND Education @mndeducation]

Do you want to learn more about genetics and genetic testing to better inform the people with #MND you support? Join us online for our Competency Session, hosted by experts on 10/09 or 23/09 from 9:30-4pm. For full details, see our Calendar of Events. https://t.co/cSlZCughs2

[Grahame Morris MP @grahamemorris]

Great to meet David Whaley & listen to a presentation from @mndassoc in #Blackhall in #EastDurham this evening.

I will also sign the MND Guarantee and pledge that if re-elected, I will champion the needs of my constituents living with and affected by Motor Neurone Disease. 🙌

[David Whalley @DavidW_MND]

@grahamemorris @mndassoc Thank you Grahame and thanks again to the local party for the invite. Was great to let you all know about our work in County Durham

[Emily Mayberry (she/her) @ejmayberry]

We are hoping to speak with a few more friends/family members of people living with MND. If you provide any level of support to someone living with MND, we'd be very grateful for your input.

[MND Association @mndassoc]

It’s absolutely vital we get proven treatments to those with motor neurone disease as soon as possible.

To do this, today alongside @MNDScotland and @MNDoddie5, we've written letters to both regulators and ILTOO Pharma regarding the MIROCALS trial.

Read more information below.

[MND-SMART @mndsmart]

Congratulations to our dynamic, hard working & enthusiastic team at Newcastle for reaching the milestone of recruiting 50 participants to @mndsmart Keep up the excellent work! @NewcastleHosps @mnd_NlandGroup
@MNDTyneAndWear
@MNDDurhamDarlo

[MND Education @mndeducation]

Join us on 26/3 for our first #MND Community of Practice Information and Knowledge Exchange of 2024. These events are for members to come together and explore a topic. This session's topic is: Through thick and thin - Managing saliva.
https://t.co/cSlZCughs2

[MND Education @mndeducation]

Do you want to refresh your knowledge of #MND? Check out our Understanding MND training videos! Each topic is less than 6 minutes long, so they are easy to fit into your busy schedule.
https://t.co/GsQtqbVD1o

[MND Campaigns @mndcampaigns]

As part of the #SupportMNDCarers campaign we've found over 8 in 10 local authorities don't have a ringfenced budget for carer's assessments.

Help #MMD carers get the support they need 📢

Discover more about the new research & get involved here:
https://t.co/asuyAj1fth

[MND Campaigns @mndcampaigns]

It has been a year since government promised to consult on support for vulnerable high energy users.

Urge your MP to meet with us next week and back our call for the government to keep their promise❗️

https://t.co/pTqW5oqQ2G