Épilepsie-France Advocacy Song

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.

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.

Register for Symposium!

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!

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.

New article about rare disease community

Though we face different fights, rare disease families take similar journeys to save their children. Other families affected by rare diseases like Lafora are starting companies to help develop treatments for their children. We are grateful to partner with Vibe Bio in our efforts to find and fund a cure for Lafora disease. 

#RAREis Global Advocate Grant Awardee

We’re excited to announce that we’ve been selected as a #RAREis Global Advocate Grant awardee! We look forward to continuing to make a positive impact in our rare disease community by using this grant to increase education and awareness around Lafora Disease.  

We’re proud to be selected and look forward to expanding our education and awareness programs. We’re grateful to Horizon Therapeutics for their recognition of our efforts to support the Lafora Disease community.