- Nov14, 2020
About the Conference:
Kennedy 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 November 14-16 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 virtual 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 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 firstname.lastname@example.org.