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
Use ICD-10 code G40.C for Lafora.
EnAble Therapeutics Expanded Access Announcement
/by Frank HarrisEnAble Therapeutics has informed Chelsea’s Hope that it is willing to partner with clinicians to lead a n=1 Expanded Access trial or through the Right to Try Act with their potential therapy for Lafora Disease, VAL-1221. EnAble has indicated that the following medical resources and support will be needed: Clinicians with institutional support including internal […]
2021 Lafora Symposium Delayed Due to Continuing Pandemic
/by Frank HarrisTo Chelsea’s Hope Families, Researchers and Clinicians, I regret having to inform you that we must delay the 2021 Lafora Symposium. While international health conditions are improved over last year, the impact of the pandemic continues. The University of California at San Diego, our venue for the symposium, is unable to host outside groups due […]
Chelsea’s Hope Hosts Research Webinar
/by Frank HarrisChelsea’s Hope Hosts Research Webinar On June 7, 2021, Chelsea’s Hope was thrilled to be able to host a research webinar on Lafora Disease. We were joined by Matt Gentry of the University of Kentucky College of Medicine and the Lafora Epilepsy Cure Initiative (LECI) and Dustin Armstrong and Rob Shaffer of EnAble Therapeutics joined […]
Update on 2021 LD Meeting
/by Alan BarterDue to continued COVID restrictions, the July 2021 LD meeting has been rescheduled for September 20th – 21st, 2021 at the Sanford Consortium for Regenerative Medicine in La Jolla, CA. The meeting will be both in person and available on-line. Presentations will begin in the early afternoon on September 20th with an update regarding current […]