Kennedy Krieger Institute and A Cure for Ellie present
2022 LBSL International Patient Conference

"Information is Power" 
July 29 – August 2, 2022

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 to host a hybrid conference specifically for patients and their families interested in, or affected by, LBSL (leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation).

The five-day event will be held in person* and be available virtually. Information presented will help those living with LBSL and their family members learn more about—and manage—their condition. We will bring together patients and families from around the globe to learn from one another and hear from some of the world’s top doctors and scientists specializing in leukodystrophies.

Conference Topics:

  • International LBSL Natural History Study: An update after four years of tracking patient data using virtual assessments
  • Mitochondrial Cocktails: How to Access, Coping with Rare Disease
  • Physical Therapy and LBSL:  Management Strategies with Demo
  • Rehabilitation medicine and tone management - Transitions
  • Sick Days and Emergency Protocols:  Helpful and Potentially Harmful
  • What are we trying to achieve with basic research?
  • tRNA Synthetases – What do they do? (for layment)
  • Moser Center Lab Research Update:  an Overview of Progress and Current Work
  • LBSL Research Around the Globe
  • The Current Gene Therapy Landscape:  Opportunities and Challenges in Advancing LBSL Gene Correction
  • Breakout sessions:
    •  Infantile Onset LBS:  Tips and Tools for Quality of Life
    • childhood LBSL – Advocating for your Child’s IEP

In-person participants are invited to join the LBSL Natural History Study and free brain and spinal cord MRI scans will be available to eligible patients. For more details, click here.

A travel stipend is available to patients needing financial assistance: $2,000 for international families and $1,500 for US residents.  Free childcare will be available for patients and siblings ages one year and older. Please contact Beth Frigola McGinn of A Cure for Ellie (Bfrigola@Gmail.com) for more information regarding the stipend.

For complete details about the agenda and schedule, how to register, hotel blocks, child care click here.  

*We will follow all federal, state, and Institutional safety guidelines regarding COVID-19 and transition to an online conference if necessary. Despite this, our clinic operations and research will continue in person and we invite patients to travel to the Institute for clinical and research evaluations.