MND Campaigns
@mndcampaigns
Campaigning with people with motor neurone disease #MND @mndassoc https://volunteering.mndassociation.org/vacancy/campaigns-volunteer-476484.html
Today, we joined colleagues in Westminster to demand equal access to tofersen for all people with SOD1 MND. Huge thanks to Ellis, who is living with SOD1 MND in Wales, and Darren for joining us and helping hand in the petition with over 21,000 signatures. #PrescribeLife
Thank you so much to everyone who has supported our #PrescribeLife campaign! We're calling on the government to make sure everyone with SOD1 #MND can access #tofersen, a treatment that could save their lives. If you haven't already, please add your name to join us now:…
Hi @wesstreeting 👋 Since our ice sculpture melted last week, Seckin's SOD1 MND continues to progress... help us change that. By ensuring access to the drug tofersen, you’re giving people like Seckin a chance. It's free. The NHS just needs to administer it. Please act now.
A big thank you to @FJMcNally and @RichardBakerMP for standing with us in Westminster last week. With your support - and over 20,000 voices behind our #PrescribeLife petition, we’re calling for urgent access to #tofersen.
Right now, some people can access #tofersen, a life-saving treatment — but for people with SOD1 #MND like Ellis and Seckin, the wait for tofersen continues. Action is needed now. Add your name now to join our #PrescribeLife campaign: act.mndassociation.org/join-our-campa…
Last week, we set up an ice sculpture of Seckin who is living with SOD1 #MND, in Parliament Square Garden. It was a powerful reminder that time is melting away for those who can’t access #tofersen. Tofersen can slow the progression of this fatal disease — but right now, it’s…
Yesterday, we went to Westminster to hand in our #PrescribeLife petition, urging the Government to act so people living with SOD1 #MND can access life changing treatment. Thank you so much for signing the petition, your support led to over 20,000 signatures. If you haven't…
Thank you so much for your support towards the #MND community, @FJMcNally!
Today at Westminster I showed my support for @mndassoc in calling for equal access to Tofersen for all people with SOD1 MND. I was pleased to stop by their Day of Action event in Parliament Square and then raised the issue in Parliament this afternoon. #PrescribeLife
This afternoon we handed in a petition with 21,000+ signatures to @DHSCgovuk. Each one calls for urgent action so people with SOD1 #MND can access Tofersen, a treatment that could slow progression but is out of reach for too many. #PrescribeLife bbc.co.uk/news/articles/…
More on our ice sculpture of Seckin, who has SOD1 MND, a rare form of motor neurone disease. The sculpture was unveiled earlier today in Parliament Square as we call on @GOVUK to give Seskin and others, access to "ground-breaking" new drug, tofersen. bbc.co.uk/news/articles/…
Wondering what this is all about? This is a striking life-size ice figure of Seckin, who has a genetic form of motor neurone disease (#MND) caused by the SOD1 gene. Thread below 🧊👇 #PrescribeLife
People with SOD1 MND don’t have time to wait. #PrescribeLife 📍Parliament Square Gardens, Westminster
#MNDAssociation trustee Eleanor Dally, who is receiving Tofersen and living with SOD1 MND, explains why we are here today. #PrescribeLife #MND
We’ve brought over 20,000 voices to Westminster today. Our #PrescribeLife petition urges the Government to make #tofersen accessible for everyone living with SOD1 #MND. People with SOD1 MND don’t have time to wait #PrescribeLife.
We’ve got something up our sleeve this week. Watch this space for more info! #MND
You can still show your support by signing our #PrescribeLife petition! Together, we can push for the government to make #tofersen available to those living with SOD1 #MND. act.mndassociation.org/2025-prescribe…
