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 Welcomes 2025-2026 Board of Directors
/by Christine KellyChelsea’s Hope is pleased to announce the 2025-2026 Board of Directors: Jenifer Merriam (President), Dr. Katrina Voe Cotton (Vice President), Sheila Barter (Treasurer), Meredith Williams (Secretary), Niki Markou (At-Large Member), Roderick Howard (At-Large Member), and Nadia Ismail (At-Large Member). New to Chelsea’s Hope are Vice President Katrina Voe Cotton, MD, PhD, and At-Large Board Member […]
In Memory of Dr. Joan Guinovart
/by Christine KellyWe are deeply saddened by the loss on January 1st, 2025, of Professor Dr. Joan Guinovart — founder, former director, former researcher, and professor of IRB Barcelona, an international research center devoted to curing cancer and other diseases linked to aging. He was a brilliant scientist and a wonderful human being. Dr. Guinovart’s research was […]
Chelsea’s Hope Attended the 2024 Annual Meeting of the American Epilepsy Society
/by Christine KellyVice President Jenifer Merriam represented Chelsea’s Hope at two back-to-back conferences. From conversations with other leaders about improving organizational structure, to learning about the resources and knowledge available for the rare epilepsy community, it was a powerful event. 2024 Partners Against Mortality in Epilepsy (PAME) Conference The first day of the PAME conference, Jenifer joined […]
Now Recruiting: ION283 Safety Study
/by Christine KellyThe application packet for the ION283 safety study is now available! You can view the application as a PDF or download a Word document. Please read the email below from Dr. Minassian: “Dear Lafora disease patients and families, We are now ready to receive referrals for consideration for inclusion into the clinical trial: Safety and Efficacy of […]