Geoff Burrow (@burrow_geoff) profile picture

Geoff Burrow

@burrow_geoff

*Legacy Account* This account is now managed by the Burrow family. We WILL keep fighting to find a Treatment and Cure for MND - we are SO CLOSE 👍👊🤞

Joined February 2020
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Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)Photo by Geoff Burrow (@burrow_geoff)
From the Burrow family… for any friends who wish to pay their respects to our amazing dad, the service is on Friday 24th April 11am Pontefract Crematorium. Thank you, Jo and Claire 🙏
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Congratulations 👏 That’s absolutely amazing 🙏🏉
Mike White (@mikewhitesport) profile pictureMike White@mikewhitesportMar 1
📍🚴🏻‍♂️ 100 laps…250 miles…19 hours…and some very tired legs. They set off at 4am and finished shortly before 11pm but the riders have finished their charity ride with over £11k raised and still more money coming in. @Rob7Burrow @RadioHumberside @looknorthBBC
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Thank you everyone 🙏 That’s so wonderful to hear 🥲🥲🏉 So Proud of Rob and missing him so much 💔
Ash🧡 (@Ash_Storey4) profile pictureAsh🧡@Ash_Storey4Feb 28
ONE ROB BURROW @leedsrhinos @loinersview @LeedsNews @PeterSmithYEP @RLBarrieMc10 @Rob7Burrow #RhinosInVegas #OneRobBurrow @burrow_geoff
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Hi Daniel, Sorry but I believe it IS about funding because those “staff and resources” for a lumber puncture, can suddenly be found if you have £50,000 to pay privately !! It’s a postcode scandal.
Daniel A (@meadowcopse) profile pictureDaniel A@meadowcopseJan 17
Replying to @burrow_geoff
Sadly I don't think it's as simple as funding, it's access to staff & resources for lumbar punture on a NHS regional basis. (Was refused one for CSF anslysis on my own MND diagnostic journey to rule out other things, because my EMG had already come back unequivocal for MND).
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Geoff - my opinion is not clinically based BUT I know (and Rob definitely knew) that Interleukin 2 worked for him 🙏 Rob was given 12 to 18 months to live, but after IL-2, he stabilised for over 3 years until pneumonia beat him 🙏
Geoff (@Gebinh1) profile pictureGeoff@Gebinh1Jan 16
Replying to @burrow_geoff
So geoff why isn't it being prescribed..... As all the documents that I read have said it had no impact on patient survial Also when I had a meeting with Tanya curry she said the money was wasted....
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Yes I do think the MNDA should step in and Fund Tofersen for patients who have pathetic NHS Health Trusts who refuse 👍 Rob’s Centre for MND is still very new and doesn’t have the facilities for Tofersen YET 😉 Hopefully we will have very soon, but Trusts need to provide NOW
Simon Chippendale (@SimonChippenda6) profile pictureSimon Chippendale@SimonChippenda6Jan 16
Replying to @burrow_geoff
Hi Geoff Do you think the mnda should step in and pay for the neurologist to administer torfesen for the remaining 12 patients, it could possibly even be given at robs centre it would be a great start.
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PLEASE SUPPORT 🙏 It’s scandalous that MND sufferers, like Lillia, are being denied a MND Treatment THAT WORKS Shame on the NHS Trusts that refuse to administer a Drug that is provided FREE by the superb Biogen
kevjakeman💛💙 (@kevjakeman) profile picturekevjakeman💛💙@kevjakemanJan 14
Next week we undertake Lillia's Walk from Southampton to Westminster to raise awareness and funds to enable my daughter to obtain the treatment she needs that currently is unavailable due to the current poscode lottery that exists. Please share and donate if you can. X
Image from kevjakeman💛💙 (@kevjakeman)
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Geoff Burrow retweeted
Lee Millard (@onein300) profile picture
Lee Millard@onein300Jan 14
This has gone on far too long now. Tofersen, proven treatment for SOD1 MND, already approved by @MHRAgovuk is being denied to many #mnd eligible patients across UK. @GOVUK please grant emergency funding to health boards to administer drug. And @mndassoc please.. (1/3)
Rachel Jakeman (@blandy_r) profile pictureRachel Jakeman@blandy_r18 Nov 2025
I'm raising £50000 to Help 19-year-old Lillia fight ultra-rare SOD1 MND — funding her care, accessibility, and experiences to enhance her life... Check out my @JustGiving page and please donate if you can. Thank you! #JustGiving justgiving.com/crowdfunding/…
Donate to Help 19-year-old Lillia fight ultra-rare SOD1 MND — funding her care, accessibility, and...

Donate to Help 19-year-old Lillia fight ultra-rare SOD1 MND — funding her care, accessibility, and...

Help Rachel Jakeman raise money to support a great cause

justgiving.com
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Stop the Postcode Lottery for Tofersen — Treat All 20 UK SOD1 MND Patients Now - Sign the Petition! c.org/Ny6FFpkgZk via @UKChange
Sign the Petition

Sign the Petition

Stop the Postcode Lottery for Tofersen — Treat All UK SOD1 MND Patients Now

change.org
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That’s my Son 🥲💙🏉
Jayne Halhead (@Jaynes__World) profile pictureJayne Halhead@Jaynes__WorldJan 12
💙💛 ROB BURROW five years ago today, SO selfless, SO emotional.... 😢 "It's Jonesy's testimonial, and it's the mark of the guy that he was happy to share it with me. It's not all about me. It's about celebrating his 20 years with the club." #OneRobBurrow #MND #MoreNeedsDoing
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Merry Christmas Rob - Love you 💙💔x
Image from Geoff Burrow (@burrow_geoff)
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YES it certainly would Phil 👍 It was a Dream for Rob, and many doubted it was possible BUT Rob made the impossible POSSIBLE 👍 I / we would support any fundraising campaign 👍
Phil Park (@philpark18) profile picturePhil Park@philpark1821 Dec 2025
Replying to @alexwardfund @burrow_geoff @DavinaRivers
And in the South West. Wouldn’t it be wonderful if what Rob started in Leeds could one day be rolled out across the Country 💙 🧡
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YES Geoff …. We need A Rob Centre for MND in different parts of the UK 👍IF you could see the difference and the services it can provide 🙏 changing the MND landscape from “No Hope” to “HOPE”🤞 I would support any fundraising campaign because the NHS can’t afford it.
Geoff (@Gebinh1) profile pictureGeoff@Gebinh121 Dec 2025
Replying to @burrow_geoff
And Essex.. We, are do poorly underfunded here....
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Yes we do need one in Kent 👍 MND is not going to be a disease that is ignored 🥁
Alex Ward MND Angel 💙🧡 (@alexwardfund) profile pictureAlex Ward MND Angel 💙🧡@alexwardfund21 Dec 2025
Replying to @burrow_geoff @DavinaRivers
And we need one in Kent!
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Wonderful to meet Andy Burnham again - Andy restores confidence in Politics, but mostly he is a genuinely kind person. Manchester needs a Rob Burrow Centre for MND, just like Leeds - Lets get one built 👍
Andy Burnham (@andyburnham) profile pictureAndy Burnham
@andyburnham19 Dec 2025
Replying to @andyburnham
I left feeling inspired by Dr @AgamJung, who cared for Rob, and by the thought of creating a Rob Burrow Centre on our side of the Pennines. Kevin - expect a call from me in the New Year! Well done Leeds Hospitals Charity and the @mndassoc! 👏🏻
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Thank you Jayne - please have a wonderful Xmas and New Year 🙏 We will find a cure for MND 🤞x
Jayne Halhead (@Jaynes__World) profile pictureJayne Halhead@Jaynes__World15 Dec 2025
Replying to @burrow_geoff
❤️ We will always remember Rob, and be grateful to him for baring his vulnerability to the world with dignity, humour and humility as he battled this brutal disease. We will continue his quest to raise awareness and funds for #MND. He was blessed with a beautiful family, Geoff.
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We went to an Open Day yesterday at the brand new Rob Burrow Centre for MND - such a wonderful event. SO MANY essential services available for MND sufferers and families 👍🏉 Rob would be so proud, Bless him 💙💔🥲We will find a Cure 🤞👍
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Heartbreaking News 💔 a beautiful little boy, Kyle Sieniawski, AGED 14, with MND, has sadly passed away yesterday 🙏 ITS ABOUT TIME THAT ALL THE FUNDRAISING EFFORTS FOR MND, NOW HAS THE REWARD OF AN EFFECTIVE TREATMENT AND CURE !! So come on MND “Experts” - give us some hope 🙏
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“Everyone with SOD1 MND must receive Tofersen and this impasse is unacceptable. This small amount of extra resource, for something that could be the difference between life and death, allows those affected more time with their loved ones. “Tofersen is an incredible new treatment and people like Lillia do not have time to wait. We are demanding the government to step in and unblock the impasse. The barriers to access need to be broken down immediately.” - Alex Massey, Head of Campaigning, Policy and Public Affairs at the MND Association. #MND bbc.co.uk/news/articles/c3r7…
Teen with MND denied 'life-changing' drug by Southampton hospital

Teen with MND denied 'life-changing' drug by Southampton hospital

Lillia Jakeman says she is "disgusted" she has not been able to access the groundbreaking drug.

bbc.co.uk
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I’ve just joined a campaign to ask the Government to make sure people with the SOD1 type of #MND can access #tofersen, a life-saving treatment. Can you join too? act.mndassociation.org/2025-…
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