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

Creating Awareness
Connecting Families,
Funding Research,
Maintaining Hope.

In Memoriam
Chelsea Gerber
1990-2016

New ICD-10 Code G40.C Lafora progressive myoclonus epilepsy Effective October 1, 2023 Providers, please use the new ICD-10 code for Lafora disease.
Lafora Disease Sibling Support Group with Mariah Merriam
The background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'.

FACE it Campaign

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.

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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