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.
Update on Myozyme and Lumizyme drugs from Sanofi for Lafora Disease treatment
/by Christine KellyChelsea’s Hope continues to champion the development of effective Lafora disease (LD) therapeutics in both the research community and with interested companies. One recurring question is whether currently used therapeutics for other glycogen storage diseases could be used in LD. As you know, this would greatly benefit our community, allowing rapid therapeutic adoption. Because of […]
Shining a light on Lafora disease for Rare Disease Day 2023
/by Christine KellyWe will show our stripes for Lafora disease on 2023 Rare Disease Day. SACRAMENTO, Calif. – February 27, 2023 – Chelsea’s Hope Lafora Children Research Fund, a 501(c)(3) nonprofit organization, wants to share stories of Lafora disease patients like Alexis Rodriguez to raise awareness about the ultra-rare epilepsy. Lafora Disease is a degenerative neurological condition […]
New article about Lafora disease
/by Christine KellyREAD ARTICLE: Role of Astrocytes in the Pathophysiology of Lafora Disease and Other Glycogen Storage Disorders New from Dr. Jordi Duran! It’s a review on how the accumulation of glycogen in astrocytes, glial cells in the central nervous system, contribute to Lafora disease and other neurodegenerative conditions.
Chelsea’s Hope Received CZI Grant to Advance Lafora Research
/by Christine Kelly