Our baby daughter Frankie was born with a very rare neurodevelopmental condition called DeSanto-Shinobi syndrome. Until very recently, there no treatment beyond supportive care.

But that is beginning to change.

New advances in artificial intelligence now mean that we can search for existing, safe, licensed drugs that might be repurposed to target the specific genetic pathways involved - not just for Frankie’s condition, but for many rare conditions like hers.

That is why we have set up this charity.

We are raising money to fund this research (which isn't profitable for drug companies as so few children have each of the conditions) so that families like ours are not simply told to wait and see, but are offered real, evidence-based hope.

This is the very first event I’m doing for Frankie and for the charity and Ill be running the Brighton Half Marathon whilst pushing Frankie in her buggy. Every single penny we raise will go directly into the research that could change the lives of children like her as we are covering all the charity costs.