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 non-profit 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.
EYE ON HEALTH: Raising Awareness for Lafora Disease
/by Niki MarkouPresident of Chelsea’s Hope, Frank Harris was featured on @wcbtv channel 3 in Tennessee to raise awareness and discuss his story of caring and loosing his daughter Kelsey who had Lafora disease. To watch the video
Rare Mamas Rising Feature
/by Niki MarkouOne of our rare mamas, Niki Markou has been featured on the Rare Mamas website that is empowering rare disease moms. Rare Mamas contains blogs, podcasts and resources by rare disease mom founder, Nikki McIntosh who is a writer, speaker and advocate for mamas who care for children with rare disease. “It was an honor […]
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 […]