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News Article ————

Torchbox recognised for campaign supporting access to life-changing MND treatment

Author image Published by Sue Johns-Chapman
Published Date 22.07.2025

Author: The Team at Torchbox

We’re over the moon to share that Torchbox has been shortlisted for Best Not-for-Profit Campaign (Large) at the 2025 UK Agency Awards for our work with the MND Association.

This nomination celebrates our petition campaign that mobilised more than 15,000 people in just three weeks to help secure access to a life-changing treatment for people with a rare form of motor neurone disease (MND).

For a team that exists to empower positive changemakers, this campaign is a powerful reflection of our purpose.

Objective for the campaign

The target for the campaign was to generate 10,000 e-petition signatures to urge NICE (The National Institute for Health and Care Excellence) to reconsider the route to approval for Tofersen, a life-changing drug for people with SOD1 motor neurone disease (MND).

Tofersen is a drug that has been proven to prevent MND symptoms worsening, and in some cases, reverse symptoms. It’s groundbreaking and unbelievably important to people with MND.

NICE had previously declined to appraise the drug as a Highly Specialised Technology (HST) because they didn’t classify SOD1 MND as a clinically distinct form of MND. Instead, they planned to appraise it through their standard appraisal route. This created a problem – Tofersen is very expensive and targeted to a very small number of patients, meaning that it had almost zero chance of a successful appraisal through the standard route. However, if they classed it as an HST, the chances of a successful outcome would dramatically improve.

Our approach

From our extensive experience in the charity sector, we know petitions can perform well as an easy action to take that can make a huge difference.

We worked with the MND Association to develop a petition campaign that made medical terminology and policy understandable for wide audiences, while creating urgency and encouraging action. The campaign used simple, effective messaging and bold creatives to cut through on social media.

The results

In just three weeks, over 15,000 people signed the petition, exceeding the target by 50% and prompting NICE to reverse its decision. This gave Tofersen a much stronger chance of being approved.

Eleanor Dalley, 49, who is taking Tofersen through the early access programme said: “NICE has listened to the SOD1 MND community. By changing its original decision, NICE has taken another step to secure this incredible drug, giving us time and hope, two things that often feel out of reach for people diagnosed with MND.”

Tanya Curry, CEO at MND Association, said: “Tofersen is the first proven effective treatment for MND for many years, and we are incredibly proud that our campaign has helped our community get across how important it is that we give it the best possible chance of being approved.”

The efficiency meant MND Association could redirect remaining budget to a follow-up campaign, thanking supporters and recruiting them to MND Association’s campaigning network.

MND Association’s mission is “to improve the lives of people with MND today, while building hope for tomorrow.” This campaign delivered that in a direct, practical way.

What this nomination means to us

We’re a 100% employee-owned agency. That means everyone here shares responsibility and ownership for the work we do and the impact it has. Being shortlisted for this award is a proud moment for all of us – it’s the kind of campaign that reminds us why we do what we do. We’re grateful to our brilliant partners at MND Association for trusting us to help tell this story.

“It feels amazing to be shortlisted for our work with the MND Association at the UK Agency Awards! What made this campaign particularly effective was delivering 150% of the target a month early, and for less than a third of the budget. People with MND don’t have time to wait – every week matters when you’re facing a rapidly progressing condition. By achieving results so quickly and efficiently, we increased the chances of people getting access to this life-saving drug. I’m so proud to have been a part of this campaign and can’t wait to see if we take home the award on the night.”

— Rachel Gardner, Digital Account Manager, Torchbox

More about Torchbox

Torchbox is an employee-owned digital agency and a certified B Corp. We work with amazing not-for-profit and public sector organisations in the UK and around the world.

We design and build innovative digital products and large content-managed websites, we’re the founding developers of Wagtail CMS and we deliver record-breaking campaigns across the full digital marketing spectrum. Our clients include: The NHS, NASA, Samaritans, DEC, Oxfam, RNIB, Mind and the Disasters Emergency Committee.

Keep in touch

We regularly run webinars and in-person events for the charity and public sectors, sharing insights on everything from AI to accessibility and digital marketing know-how. Follow us on LinkedIn or sign up to our newsletter to stay up to date and join the conversation.

www.torchbox.com

www.linkedin.com/company/torchbox

www.youtube.com/@TorchboxWork

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