Entries by Christine Kelly

Ionis Statement for the Lafora Community

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Ionis shared a statement with Chelsea’s Hope for the Lafora community. They have agreed to license the ION283 program to Noventia Pharma, and Noventia will assume responsibility for developing it.  The licensing of the ION283 program will not impact the Safety Study. That will continue as planned, and we will update our community as soon […]

ION283 Safety Study Approved

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We just learned from Dr. Minassian that the FDA has approved the ION283 Safety Study! We are so grateful for your continuous support, for Dr. Minassian and his team at UTSW, Dr. Messahel, IONIS, and everyone involved for getting us here. Our patient community has been a driving force in supporting reaching this stage and […]

Announcing a 2024 T-Shirt Design Contest

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As part of our upcoming Awareness Campaign, we are excited to announce a t-shirt design contest! From now until August 12th, you can submit your designs to be considered. Our Board of Directors will vote on the winning design on August 13.  Chelsea’s Hope is celebrating 15 years as a patient advocacy organization this year. […]