Registered charity no. 1201757 · Brighton, UK
Children born with Congenital Central Hypoventilation Syndrome (CCHS) stop breathing when they fall asleep. There is no cure and no treatment beyond artificial ventilation - yet. Keep Me Breathing exists to change that, by funding the research and technology that will let every child with CCHS sleep safely.
donation goes directly to developing treatments for CCHS.
Proud to be supported by
Official charity partner
We’re honoured to stand alongside the Sussex business community this year, helping bring the world’s first CCHS treatments closer with every celebration.
The condition
Congenital Central Hypoventilation Syndrome is an ultra-rare genetic condition, caused by a mutation in the PHOX2B gene, that disrupts the brain’s automatic control of breathing. When a child with CCHS falls asleep, their body simply forgets to breathe.
Every night of their lives, they depend on mechanical ventilation, through a tracheostomy or a mask, to keep them alive until morning.
Our mission
We are developing a treatment to change and to save the lives of CCHS patients - in a world where such a treatment does not exist. We will do whatever it takes. Our accelerated five-year plan is backed by over 130 doctors, scientists and medical professionals.
A fully implantable biofeedback phrenic-nerve pacing system - the world’s first treatment designed specifically for CCHS. Like a cardiac pacemaker for breathing, it will sense what the body needs and adjust the rate and depth of every breath automatically - no wires, no external kit, no mechanical ventilator.
First patent filed
The world’s smallest portable, non-invasive CO₂ wearable - built by Keep Me Breathing. VENTO reads the one signal that matters most to a child with CCHS, carbon dioxide, continuously, comfortably and without needles or hospital hardware.
Patent pending
Collaboration
We’re excited to be working with The Cambridge University Consulting Network to research and move forward with an advanced diaphragm pacer.
The consulting network has a strong history of working in the rare disease field, and we’ll keep you fully updated on progress as it is made.
“These children and their families deserve a normal life, deserve to be independent and deserve to be happy. We won’t ever stop until we achieve that.”
Steph & James Oakley · Casper’s parents, founders
Why we exist
Keep Me Breathing was set up by Casper’s parents after he was born with CCHS and a complex neuroblastoma. Casper from Hove, Beau from Arundel, and every child like them around the world, are who this research is for. When our mission is complete, their lives will be transformed.
Join us
Every penny goes straight to CCHS research - nothing to admin. One-off or monthly.
Run, ride, bake or climb - set up a JustGiving page and choose Keep Me Breathing.
Lend your skills and time to our volunteer network and events across the year.
Bring your organisation alongside a high-impact charity with a clear mission.
Get in touch
We are working relentlessly to make breakthroughs in CCHS research, get treatments faster and find a cure. Whether you’re a CCHS parent, a clinician, a researcher, a fundraiser or press - we’d love to hear from you.
© 2025 All Rights Reserved. Keep Me Breathing. Registered Charity Number: 1201757.
