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News & Blog

Calling all People and Caregivers in the Lafora Disease Community: We need your help!

January 31, 2021/by Alan Barter

Take a survey to help better understand what it’s like living with Lafora disease (LD) and to help guide development of new potential LD therapies. Learn more here: Calling All People and Caregivers

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https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png 0 0 Alan Barter https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Alan Barter2021-01-31 09:52:042021-01-31 10:00:13Calling all People and Caregivers in the Lafora Disease Community: We need your help!

A Special Song for Angelina

January 31, 2021/by Alan Barter

Just Like A Butterfly by Niki Markou “Just Like A Butterfly” Audio Release Date: February 10th, 2021, available on multiple digital music platforms like Spotify, Apple Music & TikTok. We ask that you stream the song and also make a donation! Help save our children. “This journey has been extremely difficult and devastating and we […]

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https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png 0 0 Alan Barter https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Alan Barter2021-01-31 09:24:032023-02-14 11:56:02A Special Song for Angelina

Grant for Lafora Households: Chelsea’s Hope Patient Assistance Deadline Extended

December 1, 2020/by Frank Harris

***GRANT FOR LAFORA HOUSEHOLDS AWARDED; FORM CLOSED*** Dear Lafora Families, With funding from the Global Genes’ Continuity of Care RARE Patient Impact Grant, Chelsea’s Hope is offering grants to Lafora Disease Households impacted by COVID-19. Limited funds are available, but we hope to help as many patients as possible. The grant application deadline has now […]

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https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png 0 0 Frank Harris https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Frank Harris2020-12-01 21:19:082023-09-26 07:38:24Grant for Lafora Households: Chelsea’s Hope Patient Assistance Deadline Extended

The Epilepsy Foundation Releases Statement on Coronavirus

March 9, 2020/by Frank Harris

The Coronavirus has affected our daily dialogue. Chelsea’s Hope understands that to those caring for a Lafora patient, concerns are even greater. The Epilepsy Foundation has released the following brief on the coronavirus. Concerns About Coronavirus

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https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png 0 0 Frank Harris https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Frank Harris2020-03-09 14:00:462020-03-09 14:02:43The Epilepsy Foundation Releases Statement on Coronavirus
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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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