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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

G-Tube Tips – A Mother’s Perspective

July 9, 2024/by Niki Markou

A Mother’s Perspective on the Benefits of a Feeding Tube for Lafora Disease Patients Has your child got a Gastrostomy tube, or have you been advised they will need it? It is a very daunting decision to make as you are still grieving from the devastating diagnosis and watching your child change so rapidly. Take […]

Our second annual #LaforaBodyDiseaseDay is October 1st, 2022

October 1, 2022/by Niki Markou

Anissa with Lafora Disease: Sister Mariah talks about sibling survivors’ guilt For our second annual Lafora Body Disease Day this October 1st, 2022, we wanted to share the Merriam family story. Watch sibling Mariah Merriam talk about her challenges of being the only sibling without Lafora disease and the survivor’s guilt she feels watching her […]

Vibe Bio Launches To Transform Drug Development For Patients With Rare Diseases

June 22, 2022/by Niki Markou

More information on new biotech company Vibe Bio and founder Alok Tayi helping Chelsea’s Hope and patients with rare disease by using crypto to support the development of treatments.      

Vibe Bio and New Hope Therapeutics launch today

June 22, 2022/by Niki Markou

Today, I’m thrilled to share that our community is growing as our partnership with Vibe Bio officially launches to form New Hope Therapeutics – our joint company dedicated to pursuing a treatment for Lafora disease. I first learned about Vibe Bio and its cofounder Alok Tayi through a mutual contact, and after hearing about Vibe […]

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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

  • Social Security Added Lafora to Compassionate Allowances List

  • Elpida Therapeutics’ Press Release

  • ION283 to be Developed by Elpida Therapeutics

  • 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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