Lena Ismail was initially secretary on the board of directors but thanks to her dedication and passion to Chelsea’s Hope she gained her title as Executive Director after acquiring the Chan Zuckerberg Grant (CZI) to advance rare disease research.
I have been fortunate to study in Dr. Matthew Gentry’s lab for the past five years, where I have met and collaborated with many of the scientists seeking treatment for Lafora Disease.
The progress that has already been made is a testament to what can happen when scientists work closely with the patient community.
I am excited to play a role in deepening that collaboration as we move closer toward the goal of finding a cure for Lafora Disease.
Christophe Lucas is the president of Epilepsie France and also a bereaved father of Mathys who had Lafora disease. He is still a strong advocate for the children of Lafora disease in France and around the world and has made many changes to the way children are tested and diagnosed in France.
Margherita Gatti is a strong parent advocate for her son and represents many of Italian families in Italy. She has been a force in Italy to make many changes with Lafora disease creating workshops, fundraisers and community events.