My sister Lynn, daughter Jennifer and I are participating in the London Landmarks Half Marathon in April this year to help raise awareness and funds in order to progress the research into Ring20 Chromosome Syndrome, in the hope that an effective treatment is identified.

Jessica (our daughter/niece/sister) was diagnosed with Ring20 Chromosome Syndrome in August 2015. A progressive and devastating condition, which impacts brain function and development, and causes intractable epilepsy. Prior to this, Jessica was a very fit and active child.

One of the challenges faced by this condition is the inability to control seizures and in Jessica's case, the inability to control one particular seizure type, non-convulsive status epilepticus. These seizures can be described as unnoticed seizures or a 'twilight' state of confusion or lessoned awareness, which are difficult to recognise and can be mistaken for an absence seizure.

Until the mechanisms underlying the way seizures are generated in Ring 20 are understood, Neurologists cannot successfully apply a targeted treatment for these types of seizures.

In order to make a difference to Jessica's long term quality of life, we continue to raise funds for this much needed research to evolve.

Thanks for taking the time to visit our page and if you could spare any sort of donation, it would also be greatly appreciated.

Now, just hopeful that my 'wee' legs can keep up with the pair of them!

Thank you for your support,

Claire, Lynn & Jennifer