The Not a Lonely Journey is a digital and physical print travel guide created to be distributed amongst patients with Spinal Muscular Atrophy (SMA), as well as their caregivers through healthcare professionals.

SMA is a motor neuron disease that progressively disables bodily function and movement, and while new therapies have greatly improved the quality of life for patients, there is still a biased perception of what they’re able to achieve.

The value of publishing a travel guide for SMA patients is it directly combats this bias by showing just how much can be accomplished despite this diagnosis.

Biogen ECP approval process for the Not a Lonely journey project involved the Regulatory, Legal, Medical and PAG roles from early stages. Being an unbranded initiative with SMA patients’ recruitment step, ECP PAG department involvement was mandatory. Global MLR process for the Travel Guide video and the Travel Book approval included rounds of offline revisions with the final Veeva PromoMats approval step.

The main cultural condition, within the world of SMA patients and care, was that people (particularly doctors) had stopped believing that improvements were possible. There has existed for a long time a sense of pity towards SMA patients, that they’ll be confined to be alive, but never truly living. With this guide, we wanted to show that this wasn’t true.

In terms of market conditions, we also published this guide to coincide with the 5 year anniversary launch of Spinraza, the leading SMA drug developed by our client. It felt like the perfect moment to finally take patients stories out into the world and say, “despite what you think, huge improvements are being made and maintained”.

Placement 1

Execution: Live Event

Platform/Place: 3rd International SMA Europe Scientific Congress

Number of airings/placements: 3 days

Start date: 21st October 2022

End date: 23rd October 2022

Location/Region: Barcelona/Spain

https://www.sma-europe.eu/barcelona-2022

Our core audience was the entire SMA community including patients, caregivers, and healthcare professionals across Europe, seeking to empower patients and caregivers with practical hope, and convince healthcare professionals to be less pessimistic about the abilities of their patients.

Our brief was to create an initiative for the 5th anniversary of Spinraza’s launch that highlighted the strides patients have made over the last five years. Our objectives were to focus on patient achievements, changing the narrative around what life with SMA is like. The aim was to give patients, caregivers, and importantly healthcare providers, a sense of pride for what they’ve achieved, as well as hope for both the present and the future.

Patients with Spinal Muscular Atrophy were for years condemned to an inevitable loss of bodily functions that would eventually disable and kill them. Thanks to novel therapies such as Spinraza, motor function loss was able to be slowed and sometimes maintained, keeping patients well for longer and broadening what was possible in their lives.

The creation of a travel guide designed solely for SMA patients was huge because for the first time they saw representations of themselves out in the world, where before they were often depicted as feeble and homebound.

Through the simple act of showing an SMA patient traveling around their home city or abroad to another, we empower patients and caregivers to dare to do more while at the same time challenging the perception of healthcare professionals who are wary about the success their patients can achieve out in the world.

This was a huge achievement against our objectives, which tasked us with highlighting the improvements SMA patients have made over the years since the advent of new and better therapies. More than just showing patients “doing better” we offered a tool and call-to-action that inspired other patients to do the same with concrete, tangible advice.