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.
FOR IMMEDIATE RELEASE
/by Niki MarkouOctober 1st Marks Inaugural Awareness Mission for Lafora Disease Lafora Body Disease Day is raising awareness for funding, research, and medical therapies SACRAMENTO, Calif. – September 30, 2021 – Chelsea’s Hope Lafora Children Research Fund today announced that October 1, 2021, is the inaugural Lafora Body Disease Day. The mission is to create awareness, […]
Lafora Body Disease Day & Awareness Month – October 1st
/by Niki MarkouIt’s our first year acknowledging a day for Lafora disease and October 1st is the day. Lafora Body Disease Day Our mission is; Creating Awareness – Connecting Families – Funding Research – Maintaining Hope Our goal is to raise awareness and much needed funding to continue the research and turn them into therapies. We have […]
Our Fight Against Lafora Disease
/by Niki MarkouFamilies are raising awareness to save their children from a fatal genetic condition, Lafora disease. Moniqueca Barfield from Gardendale, Alabama and Azeza Kasham from Ann Arbor, Michigan are pleaing for support in their fight against Lafora disease. Azeza, mother of three, has already lost her first-born son Haitham to this devastating disease at just 16 […]
EnAble Therapeutics Expanded Access Announcement
/by Frank HarrisEnAble Therapeutics has informed Chelsea’s Hope that it is willing to partner with clinicians to lead a n=1 Expanded Access trial or through the Right to Try Act with their potential therapy for Lafora Disease, VAL-1221. EnAble has indicated that the following medical resources and support will be needed: Clinicians with institutional support including internal […]