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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

August 10, 2023/by Christine Kelly

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.

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https://chelseashope.org/wp-content/uploads/2023/08/Chelseas-Hope-Welcomes-First-Director-of-Family-Support.png 628 1200 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-08-10 08:40:192023-08-10 08:40:19Director of Family Support Announcement
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A graphic with nine headshots introducing new team members; text says: Meet the team sophie stein research support intern jeremiah paul fundraising support intern samy sharif science communications intern sara gerber research support intern sally leung research support intern jhanavi kotian science communications intern kait fedor development fellow vaishali jain fundraising support intern anna gould science communications intern New Team Members Join Chelsea’s Hope for the Summer
2026 Summer Interns Amrita Arianna Kun Sonia Soomin Danika Deveny Jeanine Josie Qianna Isabella Sereen Adaku Anson Elizabeth Sara Meet our 2026 Summer Interns!

About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

View Chelsea’s Hope Newsletter Archive 

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Latest News

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  • Meet our 2026 Summer Interns!

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 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

976 Maywick Dr.

Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

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Link to: Rare Genomes Project Link to: Rare Genomes Project Rare Genomes ProjectRare Genomes Project logo on top of a purple to white gradient Link to: Ask the Experts: A Q&A Session for Lafora Families Link to: Ask the Experts: A Q&A Session for Lafora Families Text says 'Ask the experts: a q&a for Lafora families' over a white and gray hexagonal background.Ask the Experts: A Q&A Session for Lafora Families
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