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About Christine Kelly

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Entries by Christine Kelly

Protected: Pediatric to Adult Care Transition

August 24, 2026/by Christine Kelly

There is no excerpt because this is a protected post.

Announcing a Town Hall: Fully Funding the Safety Study

May 14, 2025/by Christine Kelly

We hope you will join us for a Zoom Town Hall next Wednesday, May 21st, at 4 p.m. ET, to discuss fully funding the safety study. Register to attend today! We have less than a month to fundraise to enroll the final four patients on the original timeline. Learn more about our fundraising initiatives and how […]

Read 2024 Impact in our Annual Report

April 11, 2025/by Christine Kelly

Safety Study Update – February 2025

February 20, 2025/by Christine Kelly

We are excited to share an update about the ION283 Safety Study: the team at UTSW can continue enrolling patients.  In December 2024, the first patient in the Lafora Disease Safety Study at the University of Texas Southwestern Medical Center (USTW) received their first dose of ION283, a treatment designed to halt disease progression. Last […]

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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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