Dravet Syndrome UK
5 Million Steps for Dravet Syndrome UK
We're aiming to complete 5 million steps before International Epilepsy Day on 14th February 2022, as part of the International Bureau of Epilepsy's global 50 million steps challenge.
Story
Dravet Syndrome UK are aiming to complete 5 million steps in the International Bureau of Epilepsy's global 50 Million Steps challenge, raising awareness of the 50 million people worldwide who are affected by epilepsy, including those living with Dravet Syndrome.
Will you join us in completing 5 million steps collectively with our community, before International Epilepsy Day on 14th February?
Often described as a complex form of epilepsy, Dravet Syndrome is a rare neurological condition that affects around one in every 15,000 people in the UK.As well as experiencing severe, difficult-to-control seizures, children and adults with Dravet Syndrome have varying degrees of intellectual disability and a spectrum of associated conditions (known as comorbidities), which may include autism, ADHD, behaviours that challenge and difficulties with speech, mobility, eating and sleep.
Neil, a healthy and beautiful baby, had his first seizure when he was 3 months old, a lengthy tonic-clonic seizure lasting approximately 40 minutes, which required an emergency night time visit to hospital. This was to become the pattern for years, frequent prolonged seizures, stays in hospital, referrals to larger hospitals with epilepsy specialists, tests and more tests and cocktails of various epilepsy medications tried.
Dravet Syndrome UK is dedicated to improving the lives of all those affected by Dravet Syndrome through support, education and medical research. Each year we need to raise over £320,000 to keep providing our much needed services.
We could not survive without the fundraising efforts of our amazing supporters - can you step with us or support our steppers in 2022? We look forward to supporting you, every step of the way! Thank you.