Register for Symposium!

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Chelsea’s Hope Lafora Children Research Fund and the Lafora Epilepsy Cure Initiative are happy to announce the return of our in-person Annual Lafora Disease Science Symposium.

The deadline to register to attend in person has passed, but virtual registration will remain open!

Click here for more details and the registration form

This conference is ideal for families affected by Lafora, researchers, healthcare professionals, and our industry partners.

You will hear from caregivers, clinicians, researchers, and pharmaceutical representatives on therapeutic development and diagnosis progress. We will also have an optional session for caregivers.

Date: September 26th – 27th, 2022.

Details: Attend virtually from anywhere in the world!

Check out our agenda outline for the event!

Virtual attendees must also register online.

Épilepsie-France Advocacy Song

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We want to highlight some of the advocacy work by Épilepsie-France! They have created a song to demystify epilepsy for the public. It’s a tribute to Mathys Lucas, one of our Lafora heroes from France. 


Pictured here are actor and comedian Frédéric Bouraly with Christophe Lucas, president of Épilepsie-France and bereaved father of Mathys, as well as children from the video.


Read the full article

Christophe Lucas shared that the music was composed by Gérard Gabbay, brother of the Vice President of Épilepsie-France. They worked for a year on the video and named it « La vie d’abord » (“Life First”) after the slogan of the organization. 

An estimated 650,000 people in France have epilepsy and this song works to break misconceptions about seizures and living with epilepsy.

Watch the video on YouTube