Arundel family charity takes on 1,000-mile bike ride to Austria to help children who depend on breathing support

Ride for Rare will raise funds for Keep Me Breathing and help test VENTO, a new wearable CO2 monitoring device

An Arundel-linked medical charity is preparing for an extraordinary 1,000-mile cycle challenge from Arundel to Austria to help develop technology for children with CCHS who rely on breathing support every night to keep them alive.

The challenge, called Ride for Rare, will see riders James Howell and Max Edginton set off from Arundel and cycle across Europe before finishing with the legendary Grossglockner High Alpine Road in Austria - a 21.2 km mountain climb.

The ride is raising funds for Keep Me Breathing, a UK charity developing VENTO, a lightweight wearable device designed to monitor carbon dioxide levels in real-world settings. The charity hopes VENTO will help identify breathing problems earlier and support safer, more independent lives for people with rare and chronic respiratory conditions.

For Eloise Kent, a Keep Me Breathing Trustee who lives in Arundel, the mission is deeply personal. Her son Beau has Congenital Central Hypoventilation Syndrome (CCHS), a rare condition that means he cannot breathe properly without ventilator support.

“For families like ours, breathing support is part of everyday life,” said Eloise Kent, Trustee of Keep Me Breathing.

“Beau’s condition means we live with constant monitoring, equipment and risk. Technology like VENTO could make a real difference by helping families and clinicians understand what is happening outside hospital, during normal daily life. To see this challenge starting here in Arundel, our home, means so much. Since we founded the charity back in 2023, the Arundel community has always shown us huge support and we are incredibly thankful - we would not be able to do what we do without it. Every mile cycled in this new challenge will help bring this technology closer to the children and families who need it.”

Unlike a standard fundraising ride, Ride for Rare will also help validate VENTO. The riders will use the device during the journey, allowing Keep Me Breathing and its research partners to gather valuable real-world data during prolonged exercise, changing weather conditions and altitude.

The project is being supported by researchers at the University of Portsmouth’s Extreme Environments Laboratories, who have been helping test the device in demanding conditions.

James Oakley from Hove, father to Casper and Founder of Keep Me Breathing, said:

“Ride for Rare is about turning an extreme challenge into meaningful progress for patients. It will raise vital funds, but it will also generate data that helps us test VENTO where it matters most - in the real world. Thank you to James and Max who wanted to raise funds for KMB and who now have created an additional opportunity for us to test VENTO in real world scenarios."

Keep Me Breathing is calling on people across Arundel, West Sussex and the wider local community to support the riders by donating, sharing the campaign and cheering them on as they begin their journey. 

You can watch them set off at 9am from the Arundel Farmers Market on 18 July and can sponsor them here: https://www.justgiving.com/page/james-howell-5.