Niki Markou who joined as a board member in 2021 is based in Sydney Australia, starting off as a parent advocate for Chelsea’s Hope to help families just like her stay informed and she continues to be in close contact with many families around the world. Her involvement has progressed to engaging with fellow board members to create updates on research and liaise with associations to create more awareness for Lafora disease. Niki has joined fellowships in the aim to reduce barriers to entry into early access around the world through learning, discussion, networking and support. Niki’s professional background is in sales and marketing where she is endeavouring to utilise her skills in the best way she can for the greater good of the children.