An Arundel-linked medical charity is preparing for an extraordinary 1,000-mile cycling challenge to Austria to help children who rely on breathing support every night.
Ride for Rare will see James Howell and Max Edginton set off from Arundel and cycle across Europe before finishing on Austria’s Grossglockner High Alpine Road, including a gruelling 21.2-kilometre mountain climb.
The challenge will raise funds for Keep Me Breathing, which is developing VENTO, a lightweight wearable device designed to monitor carbon dioxide levels in everyday settings.
The charity hopes the technology will identify breathing problems earlier and help people with rare and chronic respiratory conditions live more safely and independently.
For Arundel resident and charity trustee Eloise Kent, the mission is deeply personal. Her son Beau has Congenital Central Hypoventilation Syndrome, 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.”
The riders will wear VENTO during the journey, allowing researchers to collect data during prolonged exercise, changing weather and altitude.
Keep Me Breathing founder James Oakley 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."
The riders will leave Arundel Farmers Market at 9am on 18 July.
Donate here: James Howell is fundraising for KEEP ME BREATHING
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