APPG on Motor Neurone Disease
@APPGonMND
This is not an official feed of Parliament. It has not been approved by either House. APPGs are informal groups of Parliamentarians with a common interest.
Today @mndassoc are here in Westminster calling on the government to work with NHS England to make tofersen, a breakthrough drug, available to people with SOD1 #MND. We have written to @DHSCgovuk urging them to act. Read more here: bbc.com/news/articles/…
Last week as the chair of MND APPG I wrote to @wesstreeting on this very issue. Those who are diagnosed with SOD1 MND must be given access to the potentially life changing drug Tofersen. I fully support Geoff’s call. @mndassoc
In this article shared with the Times, Geoff Burrow, Rob Burrow’s father, shares his frustration at the lack of access to tofersen for those living with SOD1 MND. Read more ➡️ thetimes.com/comment/column…
Today is #GlobalMNDAwarenessDay - a day to honour everyone affected by motor neurone disease. This APPG is committed to raising awareness of the challenges the #MND community face in parliament and beyond. Find information and support via the @mndassoc & @MNDScotland websites.
This week our Chair @IanByrneMP & Vice Chair @AphraBrandreth attended the MND Association's parliamentary event to mark #GlobalMNDAwarenessDay. The APPG is committed to continue shining a light on the hidden realities of #MND in parliament and beyond. #MNDHiddenRealities
Tofersen is a transformative treatment for people with SOD1 MND - 2% of the #MND population. It’s currently being provided to the NHS free of charge, yet some still can't access it due to capacity issues. Our Chair, @IanByrneMP has spoken about the frustration this is causing.
Yesterday, we caught up with @IanByrneMP , chair of the @APPGonMND, who expressed his frustrations at the lack of access to Tofersen for those living with SOD1 MND. You can help. Sign our petition urging the government to act now and ensure everyone eligible for Tofersen has…
We must act now for people with SOD1 #MND. As Vice-Chair of the @APPGonMND 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
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 @APPGonMND I am backing the call to improve access✍️ Sign the petition here: act.mndassociation.org/2025-prescribe… #PrescribeLife
People with SOD1 #MND deserve access to life-changing treatment. As Chair of the @APPGonMND I am supporting the call to make tofersen available now. ✍️ Sign the petition here: act.mndassociation.org/2025-prescribe… #PrescribeLife
📢 The @APPGonMND 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…
A big thank you to @APPGonMND Chair, @IanByrneMP, for asking @DWPgovuk 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…
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 @APPGonMND, I’m urging action to fix this. #MND #Tofersen #APPGMND
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, @karinsmyth, urging her to find a solution. Read the letter here: mndassociation.org/media/5795
Really interesting to hear from experts in the field of MND research at today’s APPG meeting
Great to have Prof Al-Chalabi from @kingsmnd & Dr Jane Haley from @MNDScotland here with Dr Nick Cole & Dr Mike Rogers from @mndassoc 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.
Great to have Prof Al-Chalabi from @kingsmnd & Dr Jane Haley from @MNDScotland here with Dr Nick Cole & Dr Mike Rogers from @mndassoc answering questions from colleagues and the MND community about all things #MND research.
Thanks to Dr Mike Rogers & Dr Nick Cole from @mndassoc 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.
We just heard an update from our Chair, @IanByrneMP 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.
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.
