All activities will take place virtually on Zoom. Times are listed in Eastern Daylight Time.
Tentative Agenda
(Posted 4/20/26)
Friday, July 24
2–2:30 p.m. Introductions
2:30–3:30 p.m. Magnetic Resonance Spectroscopy: How to use it for LBSL
4–5 p.m. Virtual Happy Hour
Saturday, July 25
1–2 p.m. LBSL Gene Therapy: Our journey so far, and next steps
2:30–3:30 p.m. Clinical Trials: What do they look like and feel like?
3:30–4 p.m. LBSL Outcome Measures for Trials
4:15–5 p.m. LBSL and Gene Therapy Q&A Panel
Sunday, July 26
1–1:30 p.m. LBSL Natural History and Genetic Prognostic Factors
1:30–2:30 p.m. Taking Care of Ourselves: Panel on wellness, energy conservation and mental health
2:45–3:30 p.m. Physical and Rehabilitative Therapies: What’s new?
3:30-4:15 p.m. Learning with LBSL: Panel on education and schools
4:15–4:45 p.m. Patient Registries: Opportunities and why to participate
4:45–5 p.m. Closing Remarks