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News & Blog

In Memory of Dr. Joan Guinovart

January 6, 2025/by Christine Kelly

We are deeply saddened by the loss on January 1st, 2025, of Professor Dr. Joan Guinovart — founder, former director, former researcher, and professor of IRB Barcelona, an international research center devoted to curing cancer and other diseases linked to aging. He was a brilliant scientist and a wonderful human being. Dr. Guinovart’s research was […]

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https://chelseashope.org/wp-content/uploads/2025/01/In-Memory-of-Professor-Joan-Guinovart.png 1080 1080 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2025-01-06 12:30:042025-01-08 11:15:35In Memory of Dr. Joan Guinovart

Chelsea’s Hope Attended the 2024 Annual Meeting of the American Epilepsy Society

December 20, 2024/by Christine Kelly

Vice President Jenifer Merriam represented Chelsea’s Hope at two back-to-back conferences. From conversations with other leaders about improving organizational structure, to learning about the resources and knowledge available for the rare epilepsy community, it was a powerful event. 2024 Partners Against Mortality in Epilepsy (PAME) Conference The first day of the PAME conference, Jenifer joined […]

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https://chelseashope.org/wp-content/uploads/2025/01/PHOTO-2024-12-08-16-08-15-e1736282751108.jpg 900 1200 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2024-12-20 12:37:332025-01-07 13:28:54Chelsea’s Hope Attended the 2024 Annual Meeting of the American Epilepsy Society

Now Recruiting: ION283 Safety Study

November 17, 2024/by Christine Kelly

The application packet for the ION283 safety study is now available! You can view the application as a PDF or download a Word document. Please read the email below from Dr. Minassian: “Dear Lafora disease patients and families, We are now ready to receive referrals for consideration for inclusion into the clinical trial: Safety and Efficacy of […]

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https://chelseashope.org/wp-content/uploads/2024/04/ION283-Safety-Study.png 628 1200 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2024-11-17 07:32:542024-11-17 07:34:16Now Recruiting: ION283 Safety Study

Apply to Join the Board of Directors!

November 8, 2024/by Christine Kelly
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https://chelseashope.org/wp-content/uploads/2024/11/Chelseas-Hope-Board-at-Symposium-2024-scaled.jpg 1707 2560 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2024-11-08 12:23:042024-11-08 12:27:35Apply to Join the Board of Directors!
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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

  • 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

  • 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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