I’m back - writing poetry - you can read my latest by clicking on the following:
Keep Strong 💪 Keep Positive!😎
facebook.com/10003019754281…
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Ian Lev
1.4K posts
Ian Lev
@lev_ian
I have a rare form of MND known as PLS
Bideford, England Katılım Şubat 2021
329 Takip Edilen584 Takipçiler
Today we’re introducing a new support fund to help people who are having to travel out of their area to receive tofersen – a life-changing drug for people with SOD1 motor neurone disease (MND).
Read more. 🔗
mndassociation.org/media/latest-n…
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Ian Lev retweetledi
Many in India are waiting for Tofersen approval which can treat SOD1 #ALS. When are we expecting it in India? It’s urgently needed to save lives
@aiims_newdelhi @PMOIndia @JPNadda @MoHFW_INDIA
MND Campaigns@mndcampaigns
We're grateful to @IanByrneMP for raising the issue of tofersen access at Prime Minister's Questions today. Everyone with SOD1 #MND should be able to access the life-saving treatment #tofersen. #PrescribeLife
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Ian Lev retweetledi
Every day matters when you have MND, no one understands that better than the people who share their stories with us, like Rob.
We're shaped by their experiences, honesty and determination. We’re proud to share their voices as part of this new chapter.
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Ian Lev retweetledi
Ian Lev retweetledi
"Be kind and love fiercely."
"Love harder. Be present."
"Do it now, don't wait."
We recently asked our community what they would say to their younger self.
Their responses were amazing.
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Ian Lev retweetledi
Six people are diagnosed with MND every day.
Six people die from MND every day.
There is currently no cure… not yet.
This is exactly why every day matters.
Help us make sure at least one more person learns about MND today.
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Ian Lev retweetledi
Every day we support people affected by motor neurone disease.
Every day we push for better care and policy change.
Every day we fund and drive research towards treatments and a cure.
Every day matters.
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Ian Lev retweetledi
Today, the MND Association shared their rebranding, a project that I was proudly part of throughout 2025. The voice you hear was created using historical recordings of my voice and cloned using AI. All of this was made possible with funding from the MND Association.
MND Association@mndassoc
This is us, the MND Association. Renewed, united and driven every day to make change happen. Every day we support people affected by motor neurone disease, campaign for better care and fund ground-breaking research. Because with MND, every day matters.
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Ian Lev retweetledi
A real honour to represent Northern at the @mndassoc reception at Westminster, in the company of HRH Princess Royal. Pete Collins & the team are a great charity to work with, as we continue to build on our £23,000 fundraising efforts and our liveried & named Rob Burrow CBE train.
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Ian Lev retweetledi
A brand isn’t just a logo.
It’s everything. Every moment of support, every day of research, every bit of awareness.
Find out more about our new look and feel, shaped by you, the MND community.
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Ian Lev retweetledi
We’re so excited to share our new brand with you ✨🎉
If you’re an @mndassoc funded researcher, we’ll be in touch soon with more information for you!
Keep an eye on your email inboxes over the next week 📩👀
MND Association@mndassoc
This is us, the MND Association. Renewed, united and driven every day to make change happen. Every day we support people affected by motor neurone disease, campaign for better care and fund ground-breaking research. Because with MND, every day matters.
English
You can read my new poem/ blog on
m.facebook.com/story.php?stor…
Keep Strong 💪 Keep Positive
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Read my latest poem “A very much changed me!” - on my facebook page
“Raising Awareness of MND! - POETS Day!”
m.facebook.com/story.php?stor…
Keep Strong 💪 Keep Positive!😎
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Ian Lev retweetledi
Are you a local councillor interested in supporting people living with motor neurone disease, or do you know somebody who is?
Join up to our new #MND Councillor Network today to find out more 👇
mndassociation.org/join-our-counc…
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Ian Lev retweetledi
Apply to become Chair of Trustees at the MND Association.
We're recruiting a new Chair to help guide our mission to create a world free of #MND.
Interested? Click below to learn more and apply. Closes Friday 31 October.
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Ian Lev retweetledi
- Lead a committed Board alongside the CEO and executive team
- Be a trusted ambassador to stakeholders, partners, and policy makers
- Help steer strategic development and manage the challenges of growth and change
Apply below to become the MND Association Chair of Trustees.
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Ian Lev retweetledi
Apply to become Chair of Trustees at the MND Association.
We're recruiting a new Chair to help guide our mission to create a world free of #MND.
Interested? Click below to learn more and apply. Closes Friday 31 October.
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Ian Lev retweetledi
So, what is MND?
Here are the facts. 👇
To find out more about MND, and what you can do to help, please visit our website 🔗 mndassociation.org
🧡 #MND
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One of my poems is featured!
Keep Strong 💪 Keep Positive!😎
instagram.com/p/DPTDZ41DEWT/…
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