Entries by Chelsea's Hope

Update on the ION283 Program from Telethon

/by

Below 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 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

We 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 […]