Creating Awareness,
Connecting Families,
Funding Research,
Maintaining Hope.

In Memoriam
Chelsea Gerber
1990-2016

Creating Awareness,
Connecting Families,
Funding Research,
Maintaining Hope.

Lafora patient
Adela Richer

Creating Awareness,
Connecting Families,
Funding Research,
Maintaining Hope.

In Memoriam
Kelsey Anne Harris
1995-2014

Fighting the Rare

A documentary about Lafora disease that features Chelsea’s Hope.

Living with Lafora

The Merriam family tells their story after a devastating diagnosis.

A graphic with nine headshots introducing new team members; text says: Meet the team sophie stein research support intern jeremiah paul fundraising support intern samy sharif science communications intern sara gerber research support intern sally leung research support intern jhanavi kotian science communications intern kait fedor development fellow vaishali jain fundraising support intern anna gould science communications intern
Mathilde headshot
18 June 2025 wednesday Register online to attend the Zoom meeting. ION283: what's next? Q&A Submit your questions beforehand.

Partners

AILA
AEVEL Asociacion Espanola para vencer a la enfermedad de lafora
Asociacion CEL LUZ logo
Rare As One Chan Zuckerberg Initiative Proud member of the Rare As One Network
Rare Epilepsy Network Proud Member
Probably Genetic Logo
EveryLife Foundation
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