Niki Markou lives in Sydney, Australia and is the mother of a 19 year old girl named Angelina who has Lafora disease. She volunteers on the board of Chelsea’s Hope Lafora Children Research Fund. Previous to her daughter’s diagnosis, she had a full time career in marketing.
Niki joined the board in 2021, starting off as a parent advocate to help families just like her stay informed and where she still continues to be in close contact with many families around the world. Her main role has been creating all marketing content and liaise with fellow board members, researchers, doctors and organizations to create more awareness for Lafora disease and find possible treatments that could lead to a cure. Niki joined fellowships in the aim to learn about how to reduce barriers to entry into early access around the world, through learning, discussion, networking and support.