In 2022, Mel and I found out that two of our three children, aged 14 and 9, 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.

Through very kind donations to date we have been able to coordinate a number of ground breaking research projects around the world to investigate the cause and potential treatments for this ultra rare disease (details of which are on our website www.curedhdds.com)

As with many ultra rare diseases a lot of the onus to fund these projects sits with the families and we are so grateful for any support that you can give to further our research.

In late August I will be cycling from John O'Groats to Lands End. Now I am not a regular cyclist and as such this is going to be the biggest personal challenge I have undertaken to date ( made worse as apparently we are going the wrong way - into the prevailing wind!)

To reflect the fact that our journey to understand and then treat this ultra rare disease is going to be a massive team effort I decided I should look to complete the journey on a tandem bike.

I will be captain (front rider) of the tandem the whole journey, but will accompanied by several different stokers (second rider). There are many others who will be riding their own bikes for part of the journey, and anyone is very welcome to join.

Any donations that you make to the charity will be very gratefully received and enable us in the next 12 months to fund upcoming research projects including UCL's RNA therapy research, Sainte Justine Hospital's mouse studies and post doctoral research on DHDDS fibroblasts at Cardiff University.

We are all incredibly grateful for any level of support.