Entries by Chelsea's Hope

2025 Annual Report

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Chelsea’s Hope published our 2025 Annual Report! Inside, you’ll find a message from the President of the Board of Directors, Jenifer Merriam, and a summary of our impact in 2025. We also include a financial statement, goals for 2026 and beyond, and acknowledgments. Thank you to our generous donors, committed research network, and courageous families […]

Telethon’s Update on the ION283 Clinical Trial Pathway for Lafora Disease

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Fondazione Telethon has kindly provided Lafora patient organizations with a statement that includes some clarifications about ION283. As they note, Telethon does not currently have a contract with IONIS. Until they have a contract for the license, they have no authority to submit a protocol to the EMA/FDA for a trial. If they are successful […]

Update on the ION283 Clinical Pathway

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We understand many families are wondering what’s next for the development of the ION283 drug. Unfortunately, we received an update today from A.I.L.A. and Fondazione Telethon that Noventia Pharma returned the license for ION283 and will no longer be bringing it to a trial. Update on the ION283 Clinical Trial Pathway for Lafora Disease – […]

Announcing Lafora Therapy Town Hall

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  Questions about what therapies are next for the Lafora community? We are hosting a Lafora Therapy Town Hall to discuss what treatments the community can rally behind to bring from pre-clinical studies to clinical trials for our children. Join us next Tuesday, October 28th, at 11 am PDT via Zoom. As Lafora patient organizations – Chelsea’s […]