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When a child goes to sleep at night they should be safe. But if you are a child with CCHS, bedtime becomes the most dangerous moment of the day.

Children with CCHS do not have a ventilatory response when CO2 rises in the body. Meaning they need constant monitoring as they can simply stop breathing when sleeping.

The KEEP ME BREATHING - Ride4Rare aims to raise awareness and validate our research for rare respiratory conditions through a 1,000-mile cycling challenge from Arundel (UK) to Austria (Salzburg) in Summer 2026 over 7 days.

Keep Me Breathing, is a UK registered charity committed to transforming the lives of those living with CCHS. We are not funding awareness campaigns or general research.

We are building solutions.

- A wearable CO₂ monitor (VENTO) that gives real-time insight into breathing, live, not hours later, not in a hospital, but continuously, at home and on the move.

- An intelligent alert system that warns before a crisis happens.

- A long-term goal: a closed-loop breathing pacemaker that could remove the need for mechanical ventilation entirely.

We are already testing, building, and moving towards real-world deployment. But we cannot do this without your help. We are a small, highly focused team moving faster than traditional systems allow.

Ride4Rare is more than a fundraising challenge. It is a real world validation project. Using endurance cycling to stress-test the technology in extreme conditions, generating meaningful performance and health data that directly informs clinical and product development.

Your sponsorship will directly fund:

- Final development and validation of VENTO

- Real-world testing with CCHS patients

- Acceleration of the next phase: responsive breathing support technology

- Over 90% of funds go directly into technology development.

Join us in supporting patients & life-saving respiratory research.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.