How a Father, a Designer, and a Bold Idea Are Changing the Future
This powerful presentation followed two insightful panel discussions at #RAREsummit25, firstly exploring the power of collaboration and secondly showcasing a selection of patient led research ideas. It set the stage perfectly for James Oakley and Duncan Foster Fitzsimons to share their own remarkable story of innovation, perseverance, and patient-led problem-solving.
When James Oakley’s son Casper falls asleep, he stops breathing.
That’s the reality of Congenital Central Hypoventilation Syndrome (CCHS) – a lifelong, life-threatening rare condition where the nervous system is unable to control breathing and oxygen levels. Those with CCHS don’t sense rising CO₂ and are unable to adjust their breathing. Families are often told their lives will be limited: no travelling, no freedom, constant vigilance.
James and his family refused to accept that.
Within a week of Casper’s diagnosis, they decided to do something, not just to help their son, but to push the entire field forward. What followed has been a journey of grit, creativity, and relentless problem-solving.
Finding the right people, and not taking “no” for an answer
James started with what he jokingly calls his “crime map” – a mind-map of everyone and everything that might help. He politely, persistently pursued world-leading specialists until they agreed to support his mission. The geneticist who discovered the CCHS gene is now on his advisory board. A journalist he met at his son’s nursery helped him spread the word and connect with more experts. By building strategically and quickly, James created a network capable of making real progress.
He built a company: Keep Me Breathing, and he began pursuing an idea many people thought impossible: Could we build a pacemaker for breathing?
Today, they are in phase 1, of 3, of developing exactly that. An Adapted Respiratory Modulation Interface, the breathing equivalent of a cardiac pacemaker. If successful, it could transform the lives of people with CCHS.
Enter a designer willing to push boundaries
To explore that idea, James teamed up with Duncan Fitzsimons, Director of 7th Design, a product development company known for tackling complex healthcare challenges.
Together, they have created VENTO, a portable CO₂ monitoring device designed to:
- Sense CO₂ inside the body and in the surrounding environment
- Alert users to dangerous peaks and dips
It sounds simple, but nothing like it existed. No portable CO₂ monitor on the market came close to what they needed. So they started from scratch—building early prototypes based on every piece of research they could find.
Testing VENTO meant long sessions of exercise, breathwork, and controlled environmental experiments. Many attempts failed.
It was a huge challenge control the local environment on the skin, and finding ways to filter out all the real world noise in the wider environment that mess up readings, but by methodically solving one problem at a time, something promising emerged.
It was like trying to hear a really quiet noise in the middle of a music festival
VENTO now reliably establishes a baseline after about 15 minutes, then tracks peaks and troughs in CO₂ levels, allows trends to be established. In a live on stage demo, both James and Duncan wore devices broadcasting through their own built-in Wi-Fi hotspots.
Most importantly, VENTO can issue a breathing reminder if CO₂ rises, making it potentially lifesaving for people with CCHS.
Why VENTO is more than a medical device
One of the project’s most strategic decisions was to explore how VENTO could be used for non clinical uses, particularly in monitoring performance in sport.
Positioning VENTO beyond rare disease widens the investment appeal, speeds up testing, and generates more real-world data. It also helps build a stronger commercial case for on-the-go CO₂ monitoring and data that can ultimately support medical validation.
“Acting like a business helps you to progress products,” James says. For many patient-led groups, this mindset shift could be transformative.
A blueprint for patient-led innovation
Many patient communities have amazing ideas but little clarity on how to move them forward. James and Duncan’s collaboration shows that it is possible – likely challenging, slow, and a hard slog, but absolutely possible – to turn lived experience into breakthrough innovation.
From early failures to promising prototypes, their journey reflects what happens when determination meets design, and when parents refuse to accept the limits placed on their children’s lives.
It’s a breath of possibility—and a powerful reminder that transformative ideas can start at home.