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 nonprofit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Use ICD-10 code G40.C for Lafora.
Chelsea’s Hope Advisory Board Meets to Discuss Research Goals
/by Chelsea's HopeThe Chelsea’s Hope Advisory Board met in April to provide guidance and support for the organization’s clinical and research goals in 2025: Get the ION283 safety study fully funded Assist with the analysis and publication of collected data in order to drive biomarker development for Lafora disease and determine global prevalence rates Establish Clinical Centers […]
Announcing a Town Hall: Fully Funding the Safety Study
/by Christine KellyWe hope you will join us for a Zoom Town Hall next Wednesday, May 21st, at 4 p.m. ET, to discuss fully funding the safety study. Register to attend today! We have less than a month to fundraise to enroll the final four patients on the original timeline. Learn more about our fundraising initiatives and how […]
Read 2024 Impact in our Annual Report
/by Christine KellySafety Study Update – February 2025
/by Christine KellyWe are excited to share an update about the ION283 Safety Study: the team at UTSW can continue enrolling patients. In December 2024, the first patient in the Lafora Disease Safety Study at the University of Texas Southwestern Medical Center (USTW) received their first dose of ION283, a treatment designed to halt disease progression. Last […]