The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Researchers Have Discovered the Cause of Neurodegeneration in Lafora Patients
/by Frank HarrisOne 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.
Calling all People and Caregivers in the Lafora Disease Community: We need your help!
/by Alan BarterTake a survey to help better understand what it’s like living with Lafora disease (LD) and to help guide development of new potential LD therapies.
Learn more here: Calling All People and Caregivers
A Special Song for Angelina
/by Alan BarterJust Like A Butterfly by Niki Markou
“Just Like A Butterfly” Audio Release Date: February 10th, 2021, available on multiple digital music platforms like Spotify, Apple Music & TikTok. We ask that you stream the song and also make a donation! Help save our children.
“This journey has been extremely difficult and devastating and we do not want to lose our beautiful girl. I have written a song that is about how she bounces back from her seizures and what I wish for her ” – Mother, Niki Markou
Our Story
Grant for Lafora Households: Chelsea’s Hope Patient Assistance Deadline Extended
/by Frank Harris***GRANT FOR LAFORA HOUSEHOLDS AWARDED; FORM CLOSED***
Dear Lafora Families,
With funding from the Global Genes’ Continuity of Care RARE Patient Impact Grant, Chelsea’s Hope is offering grants to Lafora Disease Households impacted by COVID-19.
Limited funds are available, but we hope to help as many patients as possible. The grant 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 grant application form.
Chelsea’s Hope Patient Assistance Grant