Entries by Chelsea's Hope

Telethon’s Statement on the ION283 Clinical Trial Pathway for Lafora

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Fondazione Telethon has kindly provided Chelsea’s Hope and the other advocacy organizations with a statement for the Lafora patient community. At their request, we are sharing the communication below: Dear Members of the International Lafora Patient Community, Fondazione Telethon remains open to contributing to the development of ION283 and to collaborating with partners in Europe […]

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 […]