This is a graphic with a headshot of Niki Markou smiling in the center. The background is a purple gradient.

Director of Family Support Announcement

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This is a photo of Niki Markou, new Director of Family Support, smiling.Chelsea’s Hope Welcomes First Director of Family Support

We are thrilled to announce our first Director of Family Support is Niki Markou.

She will be responsible for helping to successfully plan, implement, and continually improve Chelsea’s Hope’s support, registry coordination, and patient community support programs. We created this new role to better serve our mission of improving the lives of those affected by Lafora Disease.

Meet the Team

You might know Niki from the Fighting the Rare documentary or her advocacy work. She is a powerful force in the Lafora Disease community! She has served as Marketing and Communications Director on the Board since she joined Chelsea’s Hope in 2020. Her daughter Angelina is the only patient diagnosed with Lafora Disease in Australia, and Niki frequently shares their story to raise awareness with news media, our partner organizations, and via Lafora Initiative.

She is a passionate advocate for her daughter, other Lafora disease patients, and the rare disease community. We hope you will join us in congratulating Niki on her new position! We are grateful for her commitment to improving the lives of those affected by Lafora and advancing the mission of Chelsea’s Hope.