Chelsea’s Hope Lafora Children Research Fund
Lafora disease is a severe and progressive neurodegenerative monogenetic condition in which children seemingly develop normally until their teenage years when seizures begin. Epileptic episodes become increasingly severe and more frequent, followed by the onset of ataxia, rapid dementia, and a vegetative state
After receiving her niece’s diagnosis, Lena Ismail channelled her energy into rare disease advocacy work to try to find anything and everything to help. She joined with the Lafora disease patient community, and the rest was history
As part of the Rare As One Network, Chelsea’s Hope Lafora Children Research Fund aims to advance research for a treatment and a cure for Lafora disease for this generation of Lafora patients, and decrease the diagnostic odyssey future patients face.