LBSL Virtual Conference

November 14 (All day) to November 16 (All day)

Kennedy Krieger Institute and "A Cure for Ellie" Present a Virtual Conference on LBSL

"Connection, Collaboration, Cures"

November 14-16, 2020

About the Conference: 

Ellie and Dr. FatemiKennedy Krieger Institute, one of the world’s premier neurogenetic research and treatment facilities, and the nonprofit patient advocacy organization “A Cure for Ellie” are teaming up to host the virtual conference specifically for patients and their families interested in or affected by LBSL (leukoencephalopathy with brain stem and spinal cord involvement with lactate elevation).

The three-day event will present information to help those living with LBSL manage their condition. We will bring together patients and families from around the globe to learn from one another and to hear from some of the world’s top doctors and scientists specializing in leukodystrophies.

  • LBSL Natural History Study – an update following two years of tracking
  • Understanding Mitochondria and Mitrochondrial disease
  • Physical Therapy and LBSL: Management and Treatment Strategies
  • Talking with your child and loved ones about a diagnosis
  • Overview of Lab Research Advances in Leukodystrophies
  • Protein Biology of LBSL
  • Lab Research Update of recent progress, current work and future goals
  • Gene Therapy for Leukodystrophies

There will be time set aside for group discussion among patients and/or parents. 

Agenda                                                       Register Now

Registration Information:

There is no cost to attend the virtual conference, but you will need to register in advance.  To do so or make inquiries, please contact Leslie Marsiglia at