Entries by Chelsea's Hope

Press Release: United Against Lafora, Families Worldwide Raise Awareness

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October 1st will be the 6th annual awareness campaign for Lafora disease. SACRAMENTO, Calif. – September 24, 2026 – Chelsea’s Hope Lafora Children Research Fund announced that October 1st, 2026, is the 6th annual Lafora Body Disease Day. The organization will raise awareness to support children fighting for their lives, find answers for families feeling […]

New Resource: Lafora Anti-Seizure Medication Guidelines

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We have a new resource for families developed by some members of our Lafora Clinical Network: Anti-Seizure Medication Guidelines. This document provides information to help Lafora families discuss seizure management with their clinicians. Special thanks to the clinical working group led by Dr. Roberto Michelucci, who put together these guidelines. You can now download the […]

In Memory of Nael

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Nael, from Lebanon, passed away this past week of August 2026 at the age of 19. His family shared that he was full of life; his smile was so bright despite Lafora. Before his symptoms began, he loved biking, running, and playing soccer. Please read the message below from his family and keep his memory […]

Join in Lafora Body Disease Day 2026!

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It’s that time of year again! We recognize October 1, 2026, as Lafora Body Disease Day. Chelsea’s Hope will raise awareness to support children fighting for their lives, find answers for families feeling overwhelmed, and accelerate the development of treatments. We need your participation to make it a success! Creating awareness is key to more […]