Researchers Have Discovered the Cause of Neurodegeneration in Lafora Patients

One of the more horrifying impacts of Lafora Disease is the neurodegeneration that these children suffer. Families bear witness as their children suffer in frustration from their own cognitive decline. Researchers now understand the cause of this degeneration. As Dr. Jordi Duran explains in this article, “For years it was believed that the disease was caused by the accumulation of Lafora bodies only in neurons, but now we have shown that neurodegeneration is caused by accumulations in glial cells.”

Chelsea’s Hope is thrilled to thank Dr. Guinovart, Dr. Duran, and their entire staff of researchers for this great discovery. We also offer our sincere thanks to Dr. Matt Gentry and Dr. Jose Antonio del Rio for their important support and contributions to this discovery.

Chelsea’s Hope and all the Lafora families desperately hope for a cure for Lafora. Drs. Guinovart and Duran have gotten us a step closer.

Chelsea’s Hope Patient Assistance Grant Deadline Extended

Dear Lafora Families,

With funding from the Global Genes’ Continuity of Care RARE Patient Impact Grant, Chelsea’s Hope is offering grants to Lafora Households Impacted by COVID-19.

Limited funds are available, but we hope to help as many patients as possible. The application deadline has now been extended a week to December 7, 2020. All applications will be reviewed with the goal of making awards by December 15, 2020. Please contact Chelsea’s Hope with any questions or for help completing the form.

Chelsea’s Hope Patient Assistance Grant

The Epilepsy Foundation Releases Statement on Coronavirus

The Coronavirus has affected our daily dialogue. Chelsea’s Hope understands that to those caring for a Lafora patient, concerns are even greater. The Epilepsy Foundation has released the following brief on the coronavirus.

Concerns About Coronavirus

5th LECI workshop Paper

“The 5th International Lafora Epilepsy Workshop: Basic science elucidating therapeutic options and preparing for therapies in the clinic”

5th LECI workshop Paper