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.
Update on the ION283 Clinical Pathway
/by Chelsea's HopeWe understand many families are wondering what’s next for the development of the ION283 drug. Unfortunately, we received an update today from A.I.L.A. and Fondazione Telethon that Noventia Pharma returned the license for ION283 and will no longer be bringing it to a trial. Update on the ION283 Clinical Trial Pathway for Lafora Disease – […]
Announcing Lafora Therapy Town Hall
/by Chelsea's HopeQuestions about what therapies are next for the Lafora community? We are hosting a Lafora Therapy Town Hall to discuss what treatments the community can rally behind to bring from pre-clinical studies to clinical trials for our children. Join us next Tuesday, October 28th, at 11 am PDT via Zoom. As Lafora patient organizations – Chelsea’s […]
FACE It to Raise Awareness of Childhood Dementia
/by Chelsea's HopeInvitation to Join Listening Sessions
/by Chelsea's HopeFamilies and caregivers, you might have seen in our July newsletter that we need your help to establish criteria for Centers of Excellence for treating Lafora disease. As an ultra-rare disease, most hospitals do not know what resources are needed in order to provide the best possible care for our children with Lafora. By establishing […]