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.
ION283 to be Developed by Elpida Therapeutics
/by Chelsea's HopeExciting news for the Lafora community! Ionis reached an agreement for the future of the ION283 asset with Elpida Therapeutics. Terry Pirovolakis, CEO of Elpida Therapeutics, asked us to share this letter with the Lafora community to introduce their company and their plans for ION283. You can read the letter here: Chelsea’s Hope is committed […]
Update on the ION283 Program from Telethon
/by Chelsea's HopeBelow is an update from Fondazione Telethon, which shares that Ionis transferred development rights to another organization and reaffirms Telethon’s commitment to the Lafora community. Dear Members of the International Lafora Patient Community, Following our previous communications, we would like to provide an important update regarding the ION283 program. We have been informed that Ionis […]
Introducing the Lafora Clinical Network Registry
/by Chelsea's HopeChelsea’s Hope is proud to announce the launch of the Clinical Network Registry, a centralized resource connecting patients and families to trusted providers dedicated to Lafora disease care. We are excited to announce the launch of the Chelsea’s Hope Clinical Network Registry, a new initiative as part of our Centers of Excellence project, dedicated to […]
Meet our 2026 Summer Interns!
/by Chelsea's HopeWe are thrilled to welcome 16 new interns this summer, supporting the mission through fundraising, creating resources, new webpages, and supporting research and clinical activities. With backgrounds from pre-med tracks at their schools to studying public health, they are bringing us valuable assistance to drive many projects forward. Keep reading to meet the new team […]