News

Yesterday's decision by the US Food and Drug Administration (FDA) to approve Epidiolex for the treatment of two rare and severe forms of epilepsy is a landmark moment not just for people with epilepsy in the US, but in Ireland and around the world as well.

Epidiolex is a liquid formulation of purified, plant-derived cannabidiol (CBD), a non-psychoactive component of the cannabis plant.

Researchers at the University of Sydney are using artificial intelligence to develop a method to predict seizures that will not require surgical intervention.

Nearly 70% of people with epilepsy do not experience significant reductions in symptoms of depression following cognitive-behavioral therapy (CBT), according to a review from the Journal of Neurology, Neurosurgery, and Psychiatry.

Epilepsy Ireland and our partner organisations in the FACS Forum Ireland welcomes that the Health Service Executive is taking the step of directly writing to women taking Sodium Valproate (Epilim) in the coming weeks to highlight the risks of the drug in pregnancy and to inform them of recent changes to how the drug is prescribed and monitored.

Cannabidiol (CBD) was shown in a new large-scale, randomized, controlled trial to reduce the number of seizures in patients with a severe form of epilepsy called Lennox-Gastaut syndrome. The study was conducted with Epidiolex which is manufactured by GW Pharmaceuticals.

Minister for Health Simon Harris has stated that parents affected by the drug sodium valproate have been 'let down' after the issue was raised yesterday in the Dáil by Fianna Fail TD, Bobby Aylward.

The Minister met with a selection of parents affected by the drug last month and has expressed his commitment to the issue.

"Unlike in the past with other people in the Department of Health I've taken a very interest in this issue", said Minister Harris.

A new partnership between FutureNeuro, the SFI Research Centre for Chronic and Rare Neurological diseases based at RCSI and GreenLight Medicines, an indigenous Irish biopharmaceutical company has been formed to develop new cannabis-based treatments for drug resistant epilepsies, and in particular, childhood epilepsies.

To mark National Epilepsy Week (May 14th – 20th) which begins today, Epilepsy Ireland has announced results of a survey conducted among young people aged 16-21 on their experience of living with the condition.

Developing new treatments for childhood epilepsies and neuro-developmental diseases is the aim of a new partnership between RCSI (FutureNeuro, the SFI Research Centre for chronic and rare neurological diseases based at the Royal College of Surgeons in Ireland) and F. Hoffmann-La Roche Ltd. announced today. The 3-year partnership aims to guide scientists to new gene targets to control some of the devastating childhood epilepsies that do not respond to existing therapies.

The FACS Forum spoke today at a health committee on Foetal Anticonvulsant Syndrome.

Karen Keely of OACS Ireland, whose three sons all had birth defects after she took sodium valproate, read out emotional statements on behalf of other Mothers who have been affected by the drug. Many of the families attended the hearing.