LBSL Voice

As an ultra-rare and complex disease, the key to understanding and eventually curing LBSL is to listen carefully to the people living with it.  We strongly believe that it is critical for clinicians, researchers, and regulators to know about the lived experience and priorities of this community.  ​

Please join us by sharing your voice, sharing your priorities and sharing your stories.  You will be heard!

Research Opportunity

Cure LBSL Quality of Life Research Project

The Cure LBSL Quality of Life Research Program aims to understand the unique challenges faced by individuals with Leukoencephalopathy with Brain Stem and Spinal Cord Involvement and Lactate Elevation (LBSL) and their caregivers.

This study seeks to gather comprehensive quality of life data to support future research and improve support for those affected by LBSL.

What is included?

  • Polls from the live 2024 LBSL conference .

  • Zoom interviews with LBSL research staff starting in August 2024.

Why is this study important?

  • Knowledge gained may help researchers and doctors understand more about the quality of life of people with LBSL

Who can participate?

  • Anyone with LBSL or who cares for someone with LBSL.

Where can I join?

Principal Investigator: Dr. Danielle Boyce
Research approved by North Star Review Board

FDA Listening Session

Our Patient Listening Session with the U.S. Food and Drug Administration was held May 30, 2023.