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.
Ionis 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 […]
ION283 Safety Study Approved
/by Christine KellyWe 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
/by Christine KellyAs 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. […]
G-Tube Tips – A Mother’s Perspective
/by Niki MarkouA Mother’s Perspective on the Benefits of a Feeding Tube for Lafora Disease Patients Has your child got a Gastrostomy tube, or have you been advised they will need it? It is a very daunting decision to make as you are still grieving from the devastating diagnosis and watching your child change so rapidly. Take […]