Lafora Disease Biomarker Workshop

August 19-20, 2024 at UT Southwestern

Chelsea’s Hope is partnering with the UT Southwestern Medical Center (UTSW) in Dallas, Texas, to host a Lafora disease biomarker workshop from August 19-20, 2024. Our goal is to provide a platform for community education about the role of biomarkers in accelerating the path to clinical trials for Lafora disease. Please register to attend virtually.

This workshop is designed to educate about how biomarkers can accelerate the path to therapy approval in clinical trials. Also, we want to learn which biomarkers are the most promising for use in treating Lafora disease. Finally, we will sponsor several expert discussion panels during the workshop to reach a consensus on protocols for sample collection and critical markers to track.

Click here to participate in the Biomarkers Workshop!

Frequently Asked Questions about the Biomarker Workshop

What is the schedule?

10 AM Central Time – Biomarker Workshop Session 1: What are Biomarkers? And why do we need them?

12:30 PM Central Time – Biomarker Workshop Session 2: Intro to Biomarkers for Lafora Disease

What is the second session about?

Lafora Biomarker Workshop Session 2: Potential Biomarkers and Endpoints for Lafora Disease

This session is for family members, caregivers, and clinicians. Please join us in learning about ongoing research to identify biomarkers in Lafora disease. Preliminary data from the Natural History Study will be shared during this time, as well as proposals for new methods to identify biomarkers for Lafora. There will be time for Q&A at the end of the session. AI-Generated Closed Caption Translation will be available through Zoom.

How is this different from the previous Natural History Study?

Unlike the Natural History Study, which was funded by a pharmaceutical company, this study is supported and owned by the patient community in collaboration with UTSW. This gives us quicker access and more control over the data obtained through this study.