Niki Markou, Author at Chelsea's Hope Lafora Children Research Fund

About Niki Markou

I am a Lafora parent and I am the Director of Family Support to help families like mine.

Entries by Niki Markou

EYE ON HEALTH: Raising Awareness for Lafora Disease

October 28, 2021/by Niki Markou

President 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

October 24, 2021/by Niki Markou

One 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

September 30, 2021/by Niki Markou

October 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

September 28, 2021/by Niki Markou

It’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 […]