Keep Me Breathing announced on July 17 the launch of 'Ride for Rare,' a 1,000-mile cycling expedition from the UK to Austria that will serve both as a fundraising campaign and a real-world validation effort for its VENTO wearable carbon dioxide (CO2) monitor.
Unlike traditional medical technology validations conducted in laboratories, the UK-based MedTech charity is using this endurance event to collect physiological data under actual conditions. The Ride for Rare initiative aims to accelerate development towards clinical deployment of VENTO while raising funds.
Founded after James Oakley’s son was diagnosed with Congenital Central Hypoventilation Syndrome, Keep Me Breathing has invested more than £500,000 into research and development over four years. The organization has evolved from a family-founded rare disease charity into an emerging MedTech entity focused on respiratory monitoring technologies. VENTO is described as a lightweight, non-invasive device designed to provide continuous ambulatory CO2 trend data during daily activities—a capability intended to address unmet needs in understanding patient ventilation outside hospital settings.
James Howell, VENTO Project Lead, and endurance cyclist Max Edginton will cycle across Europe before tackling Austria’s Grossglockner High Alpine Road. Throughout the journey, they will gather physiological data to evaluate how VENTO performs under prolonged exertion and varying environmental conditions. This builds on ongoing collaboration with the University of Portsmouth’s Extreme Environments Laboratories (EEL), where researchers have previously assessed VENTO during exercise and exposure to hypoxia, heat, and cold in specialist chambers.
James Oakley 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 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 plans for VENTO to eventually be part of a broader respiratory technology platform that could include intelligent alerting systems and closed-loop breathing support.
