Entries by Christine Kelly

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 […]

Noventia Statement for the Lafora Community

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Noventia Pharma released a statement for the Lafora community that Dr. Gentry read at the 2024 Lafora Disease Science Symposium. Please read it below: Dear Lafora Community, A few weeks ago we finalized an agreement for the rights to ION283, Ionis’ investigational medicine for the treatment of Lafora disease.  Since its founding, Noventia Pharma, a […]