Take 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
“Just Like A Butterfly” Audio Release Date: February 10th, 2021, available on multiple digital music platforms like Spotify, Apple Music & TikTok. We ask 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
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.
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.
The mission of Chelsea’s Hope is to raise funds for research, treatment, and ultimately, a cure for those affected by Lafora Disease.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization.
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
949-812-8823 – Frank Harris (President)
