As you know we have an ambitious plan to fund, develop and bring a new CCHS treatment to market with a 5 year accelerated plan backed by over 130 doctors, scientists and medical professionals. Thank you so much for contributing to this.
Why are we so relentless? Because for children like Casper, Beau and Tiger-Lily (that’s in Sussex alone!) and the thousands of others across the world there are incredibly limited options to help them breathe. In most cases, the standard treatment is to be connected to artificial life support for the rest of their lives, relying on a ventilator to breathe for them. And because the “market size” for CCHS is so small, no pharmaceutical or med tech company has any plans to invest in CCHS. So it’s down to us, and people like you who help us.
These children and their families as one mum described…deserve to have a normal life, deserve to be independent and deserve to be happy. We won’t ever stop until we achieve that.
We recently spent a day in the lab with our technical team to see their progress first hand and it was so exciting to see how all the elements of the R&D programme are coming together.
Phase 1: Adaptive Respiratory Modulation Interface
We are developing a high-precision external device that adjusts ventilation support based on real-time patient needs via respiratory data from an SP02 monitor (which measures oxygen in the blood). The system will show that it can deliver optimised breath timing, volume and frequency, ensuring it matches the ventilatory needs of the patient using it.
Timing: Much of this work has been done and final completion is anticipated in May 2025
Phase 2: Alert and Data Collection System
To create an advanced external alert and data review system capable of continuous monitoring and immediate feedback to both carers and clinicians.
This system will integrate with cloud-based platforms for remote data review, providing essential alerts and detailed reports on breathing patterns.
Timing: December 2025
Phase 3: Implanted Phrenic Nerve Stimulation Device
The data from phase 1 and 2 will be used to define the implantable device’s requirements. By integrating the hardware systems this will allow us to create the final implantable prototype device ready for non-clinical and clinical investigation to assess both safety and effectiveness.
Timing: Mid 2026
