Entries by Christine Kelly

Chelsea’s Hope Announces Launch of Advisory Board

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As announced during our 15-year celebratory dinner, Chelsea’s Hope is pleased to share the launch of our Advisory Board. Chelsea’s Hope has a dedicated Board of Directors, staff, and volunteers who work to execute our mission. To accelerate our path to treatment and expand our capacity to serve families with Lafora, the Board nominated 11 […]

Announcing a Q&A Session about Family Support for the Safety Study

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We are excited to announce a Q&A Session on Zoom about family support for the Safety Study this coming Monday, October 14th, at 10 am ET. Dr. Souad Messahel will join us to answer families’ questions about visas, travel insurance, health insurance, and accommodations for patients accepted into the safety study. During the meeting, Dr. […]

Lafora Body Disease Day 2024

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This year’s Lafora Body Disease Day holds special significance. Not only are we in the middle of our first Awareness Campaign, but today would have been Chelsea’s 34th birthday – our namesake and the inspiration for Chelsea’s Hope Lafora Children Research Fund. She, along with all the children we have lost to Lafora disease, is […]

ION283 Safety Study on ClincialTrials.Gov

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A Safety and Efficacy of Intrathecally Administered ION283 in Patients With Lafora Disease – ClinicalTrials.gov We are thrilled to announce that the ION283 Safety Study information was posted to clinicaltrials.gov. Read the full inclusion and exclusion criteria HERE. Please share the protocol with your clinicians to determine if your loved one is eligible. The essential eligibility criteria […]