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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

ONCE UPON A GENE PODCAST- EPISODE 138 – Chelsea’s Hope Lafora Children Research Fund with Niki Markou and Jenifer Merriam

June 10, 2022/by Niki Markou

Jenifer Merriam and Niki Markou are courageous moms, serving on our Board of Directors. They share what it’s like to cope with a child’s suffering with a rare disease with no cure. These moms are working together to fund research for medical therapies and were recently awarded a Chan Zuckerberg Initiative Rare As One grant, […]

Announcement: Ionis Pharmaceuticals

February 14, 2022/by Niki Markou

Dear Lafora Disease Community, We have received a letter from Ionis Pharmaceuticals regarding the proposed clinical trials 2022.   This year has presented us with new challenges yet again. Continuing to Hope… We will never stop fighting for a cure. Our team is working tirelessly to uncover new ways to overcome our challenges. We will […]

RESEARCH PAPER: Lack of p62 Impairs Glycogen Aggregation and Exacerbates Pathology in a Mouse Model of Myoclonic Epilepsy of Lafora

January 23, 2022/by Niki Markou

Want to read some research on Lafora disease but a more simplified version? Well Dr Jordi Duran from the Institute for Research in Biomedicine (IRB Barcelona) in Barcelona, Spain has provided us with an easier version of his latest research paper for us to read. Research Paper: Lack of p62 Impairs Glycogen Aggregation and Exacerbates […]

We’re part of the @ChanZuckerbergInitiative’s #RareAsOne Network

November 3, 2021/by Niki Markou

A group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases. Learn more here. Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries.7,000 rare diseases, one community […]

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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

  • Press Release: United Against Lafora, Families Worldwide Raise Awareness

  • New Resource: Lafora Anti-Seizure Medication Guidelines

  • Join in Lafora Body Disease Day 2026!

  • Lafora Therapy Q&A Resources

  • Student Ambassador Applications Open

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  • Elpida Therapeutics’ Press Release

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  • Update on the ION283 Program from Telethon

  • Introducing the Lafora Clinical Network Registry

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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