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Thanks to Professor Ammar Al-Chalabi & the team at King's MND Centre Clinical Neuroscience Institute for hosting Members of the APPG on MND today. It was great to hear about the diverse work you’re doing on #MND research. We look forward to supporting your work further.

It was a pleasure to host the APPG on Motor Neurone Disease All Party Parliamentary Group on MND, MND Association and guests today, and to see our wonderful researchers and professional services staff King's MND Centre explaining how we are trying to cure #ALS #MND. Thank you for your time, interest and help.

Over 300 people from across the #MND community responded to our priorities survey - thank you! Your responses will help ensure the work we do in parliament has the greatest impact on people living with and affected by MND. This survey is now closed.

Last week, MPs representing APPG on Motor Neurone Disease visited @Kingsmnd to see first-hand the research on the disease. You can read more about this informative and collaborative day here ⬇️ #MND #MNDAssociation

The next meeting of the APPG on Motor Neurone Disease will take place on 1st April and will focus on the clinical trials process. As Chair of the group, I'd like to invite people living with or affected by #MND to join the meeting via Zoom please RSVP via [email protected].

The next meeting of the APPG on #MND will take place at 11:00 today. The MND community told us research should be one of our top priorities so today’s meeting will focus on the clinical trials process and how MND drugs are discovered, developed and approved in the UK.

We just heard an update from our Chair, lan Byrne MP about results of the APPG on MND priorities survey. Your top priorities were: 1. Research & finding a cure 2. Provision of care 3. Financial support This will help shape the focus of the APPG for the year ahead.

Thanks to Dr Mike Rogers & Dr Nick Cole from MND Association for presenting to the APPG. They outlined the clinical trials process to help us better understand how #MND drugs are discovered, developed and approved. Now we need to make sure the MND community can access these quickly.

Great to have Prof Al-Chalabi from King's MND Centre & Dr Jane Haley from MND Scotland here with Dr Nick Cole & Dr Mike Rogers from MND Association answering questions from colleagues and the MND community about all things #MND research.

Big thank you to the people living with and affected by #MND who attended today’s APPG meeting. It was great to have you involved and raising challenges you face with MPs and Peers.

Really interesting to hear from experts in the field of MND research at today’s APPG meeting

At yesterday’s APPG on #MND meeting, people with SOD1 MND shared struggles accessing the breakthrough drug, tofersen. This morning APPG officers wrote to the Minister of State for Health, Karin Smyth, urging her to find a solution. Read the letter here: mndassociation.org/media/5795

Great to meet Gillian & her partner Martin at Okell’s to hear about her experience of MND & taking Tofersen – a promising treatment for those with the rare SOD1 gene. Access remains limited. As an officer for APPG on Motor Neurone Disease, I’m urging action to fix this. #MND #Tofersen #APPGMND

A big thank you to APPG on Motor Neurone Disease Chair, lan Byrne MP, for asking Department for Work and Pensions whether they’ll consider widening the scope of the Pathways to Work Green Paper consultation. Read their response here: questions-statements.parliament.uk/written-questi…

📢 The APPG on Motor Neurone Disease has issued a statement on challenges faced by people with SOD1 MND - 2% of the MND population - in accessing ground-breaking treatment, tofersen, through an Early Access Programme. Read more: mndassociation.org/media/latest-n…

People with SOD1 #MND deserve access to life-changing treatment. As Chair of the APPG on Motor Neurone Disease I am supporting the call to make tofersen available now. ✍️ Sign the petition here: act.mndassociation.org/2025-prescribe… #PrescribeLife

Tofersen is a ground-breaking treatment for people with SOD1 #MND, 2% of those with MND But not everyone can access it & time is critical As vice-chair of the APPG on Motor Neurone Disease I am backing the call to improve access✍️ Sign the petition here: act.mndassociation.org/2025-prescribe… #PrescribeLife

We must act now for people with SOD1 #MND. As Vice-Chair of the APPG on Motor Neurone Disease I'm pleased to join the call for urgent access to tofersen - a life changing treatment for people with SOD1 MND. Sign & share the petition: act.mndassociation.org/2025-prescribe… #PrescribeLife