‘Ride for Rare’ will combine fundraising with real-world validation of VENTO as the UK charity accelerates development towards clinical deployment

As many medical technologies are validated in laboratories, Keep Me Breathing is taking a different approach.

This July, the UK MedTech charity will embark on a 1,000-mile cycle expedition from the UK to Austria, using the challenge to generate real-world physiological data for VENTO – its next-generation wearable carbon dioxide (CO2) monitor – while raising funds to accelerate development.

The initiative, Ride for Rare, reflects the charity’s philosophy that medical innovation should be developed alongside the patients it is designed to serve.

Over the past four years, Keep Me Breathing has evolved from a family-founded rare disease charity into an emerging MedTech organisation developing novel respiratory monitoring technologies. Founded after James Oakley’s son, Casper, was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), the charity has now invested more than £500,000 into research and development and is progressing towards a new generation of wearable respiratory monitoring technologies. 

VENTO is a lightweight, non-invasive wearable monitor designed to provide longitudinal ambulatory CO2 trend data during daily activities – addressing one of the major unmet needs in respiratory medicine: understanding how patients ventilate outside hospital environments. Unlike traditional bedside monitoring, the device is intended to support long-term monitoring during everyday life, exercise and challenging environmental conditions. 

The Ride for Rare expedition has therefore been designed as both a fundraising campaign and a validation exercise.

VENTO Project Lead James Howell and endurance cyclist Max Edginton will cycle approximately 1,000 miles across Europe before tackling Austria’s Grossglockner High Alpine Road, a 21.2 km ascent climbing 1,754 metres to over 2,500 metres above sea level. Throughout the challenge, physiological data will be collected to evaluate VENTO’s performance under prolonged exertion and changing environmental conditions. 

The expedition builds on an ongoing collaboration with the University of Portsmouth’s Extreme Environments Laboratories (EEL), where researchers have already been assessing VENTO during exercise and exposure to hypoxia, heat and cold using specialist environmental chambers. 

James Oakley, Founder of Keep Me Breathing, said:

“Medical devices don’t exist to perform well in laboratories – they exist to improve lives in the real world. Ride for Rare is about pushing both ourselves and our technology beyond controlled environments to understand how VENTO performs under genuine physiological stress. Every kilometre makes the device better, and every donation brings us closer to putting it into the hands of patients. Thank you to James and Max who wanted to raise funds for KMB and now have created an additional opportunity for us to test VENTO in real world scenarios.”

Dr Alexander Deng, Chief Medical Officer at Keep Me Breathing, added:

“Continuous CO2 monitoring outside the hospital has remained one of the major gaps in respiratory medicine. Our collaboration with the University of Portsmouth and the data generated during Ride for Rare will help us further validate VENTO across prolonged exercise and changing environmental conditions. This is an important step towards generating the evidence required for future clinical deployment.”

The charity ultimately intends VENTO to become the first stage of a broader respiratory technology platform, initially providing wearable CO2 monitoring before progressing towards intelligent alerting systems and, ultimately, closed-loop breathing support for people living with respiratory failure.

Ride for Rare represents an unusual convergence of endurance sport, engineering, physiology and clinical innovation – a fundraising challenge that simultaneously advances medical device development.

As the cyclists begin their journey on 18th July across Europe, Keep Me Breathing is inviting organisations across the MedTech and rare disease sectors to follow the expedition and support the charity’s mission to develop technologies capable of transforming respiratory care.

About Keep Me Breathing

Keep Me Breathing is a UK-registered charity developing medical technologies for people living with rare and chronic respiratory conditions. Founded in 2021 by James Oakley and Stephanie Roberts, whose son was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS), the organisation combines charitable fundraising with in-house medical technology development, focusing on wearable respiratory monitoring and future breathing support technologies. 

Media contact

Sarah Morgan
Keep Me Breathing
sarah@keepmebreathing.com