On June 8th, we’ll embark on a 40 km walk, wearing warrior face paint, from the Thames Barrier to Mortlake. Our mission is to raise funds and awareness for individuals battling ultra-rare DHDDS genetic variants.

Two years ago Mel and I found out that two of our three children, now aged 15 and 10, have a DHDDS gene mutation which causes a metabolic disorder. Children with these mutations suffer with neurological symptoms such as tremors, myoclonus, learning difficulties, ataxia and seizures. Unfortunately for many with the genetic mutation it seems to be progressive with worsening conditions as they get older.

We have been told that as the genetic mutations are so rare (only 70 cases have been recorded in the world so far), and because they have only recently been discovered, there is currently no treatment available for them.

Over the past two years, thanks to the generosity and support of so many, we have managed to bring together a group of leading global scientists to further research into the mutation - with the hope to uncover possible treatments.

Today there are 16 research projects underway, exploring disease mechanisms, drug repurposing, and ASO and gene therapies, all bringing us closer to finding a treatment, and one day, a cure for DHDDS.