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18 June 2025 wednesday Register online to attend the Zoom meeting. ION283: what's next? Q&A Submit your questions beforehand.

Announcing June 18th ION283 Q&A: What’s Next?

June 10, 2025/by Chelsea's Hope

Questions about the ION283 Safety Study or what’s next?  We hope you will join us for a Zoom ION283 Q&A next Wednesday, June 18th, at 4 p.m. ET.

Please register in advance to attend the meeting.

While we have our FAQs, a lot has changed over the past year. We are so thankful that members of the UTSW team will join us at the Q&A to share what they know. Please submit questions through this form by Monday, June 16th, for Dr. Minassian and Dr. Messahel to review them before the meeting.

Chart showing 6/10 patients enrolled in the ION283 safety study and 7/10 patients funded

Six patients have been enrolled in the ION283 Safety Study. We have funded the seventh participant and need to raise more for the final three children to join.

We will use Zoom’s closed caption translation feature. Please do not hesitate to join us in the ION283 Q&A or submit a question for us to ask if your first language is not English.

REGISTER NOW
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https://chelseashope.org/wp-content/uploads/2025/06/QA-Safety-Study-Facebook-Event.png 1080 1920 Chelsea's Hope https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Chelsea's Hope2025-06-10 15:16:442025-06-10 15:28:53Announcing June 18th ION283 Q&A: What’s Next?
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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

  • 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!

  • Updates for the Lafora Therapy Pipeline: Requesting information from our Research Community

  • Telethon’s Statement on the ION283 Clinical Trial Pathway for Lafora

  • 2025 Annual Report

  • Telethon’s Update on the ION283 Clinical Trial Pathway for Lafora Disease

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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Link to: Chelsea’s Hope: The Fight Against Lafora Disease Link to: Chelsea’s Hope: The Fight Against Lafora Disease Chelsea’s Hope: The Fight Against Lafora Disease Link to: New Team Members Join Chelsea’s Hope for the Summer Link to: New Team Members Join Chelsea’s Hope for the Summer A graphic with nine headshots introducing new team members; text says: Meet the team sophie stein research support intern jeremiah paul fundraising support intern samy sharif science communications intern sara gerber research support intern sally leung research support intern jhanavi kotian science communications intern kait fedor development fellow vaishali jain fundraising support intern anna gould science communications internNew Team Members Join Chelsea’s Hope for the Summer
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