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Chelsea's Hope Student Ambassador

Student Ambassador Applications Open

August 21, 2026/by Chelsea's Hope

Announcing a new program for student volunteers looking to support the Lafora community! If you are a current university student in the United States, consider applying for our Student Ambassador Program this fall. Student Ambassadors will be trained to host events on their campus to raise awareness and funding for Lafora disease research. Applications for the fall semester are open from now until 11:59 PM EDT on September 4th. Read more below about the initiative.

Apply Here


Student Ambassador Program Overview

The Student Ambassador program is a semester-long volunteer initiative that will be self-paced with guidance from our Scientific and Executive Director. Student Ambassadors will be responsible for developing an awareness and fundraising campaign at their university to support Lafora disease research and are expected to attend monthly group meetings. The student ambassador will become a liaison on their campus for the work being done at Chelsea’s Hope. Student ambassadors should expect to work an average of 10 hours per month on the project and set a fundraising goal of $250. The length of the program is one semester starting in September. Download the position description here.

Email katherine@chelseashope.org with questions.

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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 

Donate to Lafora Research

Latest News

  • 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!

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

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

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: Social Security Added Lafora to Compassionate Allowances List Link to: Social Security Added Lafora to Compassionate Allowances List Social Security Added Lafora to Compassionate Allowances Listtext says "social security" on a piece of paper in a typewriter Link to: Lafora Therapy Q&A Resources Link to: Lafora Therapy Q&A Resources Lafora Therapy Development Pathway This pathway does not guarantee therapy approval, but instead shows the necessary steps a therapy must go through to become available to patients. Discovery & Early Development Early Preclinical Testing Advanced Preclinical Steps Human Safety Study & Dose Escalation Efficacy Study Regulatory Review Continued Monitoring Therapies are designed, synthesized, and evaluated for purity and stability. Therapies are tested in cells or mouse models to demonstrate safety and efficacy. Therapies are tested in animal models to validate the delivery method, dosing levels and dosing frequency A Phase I clinical study focuses on demonstrating safety in patients and finding an effective dosage. A Phase II/Ill study focuses on proving the therapy meaningfully slows or halts disease progression Review of data from the clinical trials by agencies such as the FDA are required before therapy approval. After approval, therapies may continue to be monitored for safety, effectiveness, and long-term outcomes. VAL-1221 Brain delivery is a major limitation, and therapy is currently not moving forward as an active Lafora disease therapy. Next-Generation Enzyme Fusion Therapies Preclinical work is focused on improving delivery to the brain using IV administration. EPM2A/EPM2B Gene Therapy Preclinical research to replace the mutated genes causing Lafora disease. Currently needing to complete toxicology (safety) studies Amylase Gene Therapy Preclinical work in progress to confirm amylase expression in cells and the ability to clear Lafora bodies (efficacy). VAL-0417 A preclinical enzyme-fusion therapy designed to help clear existing Lafora bodies. ICV delivery is being tested to confirm the drug reaches the brain before it can advance to the clinic. ION283 The current safety study has 10 patients who have received low levels the drug with no major safety issues. They are now in the dose escalation phase determine an effective dose.Chelsea's Hope Lafora Children Research Fund 2026Lafora Therapy Q&A Resources
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