The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 nonprofit organization. EIN: 27-1008382
Chelsea’s Hope c/o Dr. Donohue
976 Maywick Dr.
Lexington, KY 40504
Use ICD-10 code G40.C for Lafora.
ION283 Safety Study on ClincialTrials.Gov
/by Christine KellyA 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
/by Christine KellyNoventia 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 […]
Chelsea’s Hope Joins FACE It 2024
/by Christine KellyIonis Statement for the Lafora Community
/by Christine KellyIonis 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 […]