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

New article about rare disease community

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Read the full article here

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

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Read more here

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.

Clubhouse Podcast

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Listen to Alok Tayi and Joshua Forman discuss their company Vibe Bio and their fight against rare disease on the Gene Fixers podcast.

We are glad to partner with Vibe Bio!


Listen here