LBSL Voice

LBSL is ultra-rare, complex, and not fully documented in the medical literature.  The key to understanding and eventually curing this disorder is to listen carefully to the people living with it every day.  We strongly believe that it is critical for clinicians, researchers, and regulators to know about the lived experience and priorities of this community.  ​

It is a primary mission of Cure LBSL to:​

  • Amplify the patient voice in the medical and scientific communities​

  • Facilitate patient engagement and advocacy efforts with the FDA​

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

Cure LBSL has been advocating for the patient voice to be heard with the US Food and Drug Administration (FDA). We are so pleased that they have accepted our request for a Patient Listening Session, which was held on Tuesday, May 30, 2023. For more information, please visit our Advocacy page.

On February 18, 2023, we held an LBSL Community Meeting to share information about the upcoming FDA Patient Listening Session. ​

For more information about FDA Patient Listening Sessions, please visit:​ https://www.fda.gov/patients/learn-about-fda-patient-engagement/fda-patient-listening-sessions