Leigh Syndrome Family Programming

As part of Mitochondrial Medicine Conference in Orlando this year, UMDF is excited to bring a special Patient & Family Program focused on Leigh syndrome.

This June 18 session brings together leading mitochondrial experts to provide clear, practical guidance on navigating complex decisions – from understanding genetic results and MRI findings to managing nutrition, movement, and critical care planning. The session will also explore emerging approaches like n=1 clinical trials and immunotherapy in complex cases.

The program will conclude with a live Q&A, giving you the opportunity to ask questions directly to the experts.

Mitochondrial Medicine Conference at Renaissance Orlando at SeaWorld
Thursday, June 18, 2026:

3:30 PM – Welcome & Opening Remarks Moderators
Lori Martin, MD, Amy Goldstein, MD, and Mary Kay Koenig, MD

3:40 PM – Using Genetic Information in Decision Making
Rebecca Ganetzky, MD

4:00 PM – What Does the MRI Tell Us?
Melissa (Missy) Walker, MD, PhD

4:20 PM – Nutrition as Therapy in Leigh Syndrome
Austin Larson, MD

4:40 PM – Managing Movements and Tone in Leigh Syndrome
Lisa Emrick, MD

5:00 PM – What Do I Do in the ICU? Planning Ahead for Critical Decisions
Divakar Mithal, MD, PhD

5:20 PM – n=1 Clinical Trials in Leigh Syndrome
Amel Karaa, MD

5:40 PM – Complex Cases: IVIG & Immunotherapy Considerations
Peter McGuire, MS, MD

6:00 PM – Q&A Panel: Ask the Mito Experts
All faculty

Whether you’re newly navigating Leigh syndrome or looking to deepen your understanding, this session is designed to provide actionable insights and support.

For those interested in the entire conference, there will also be disease-specific breakout sessions for networking on Friday morning, as well as family programming dedicated to transitioning to adult care and caregiving, the ever popular Doc Is In sessions, where you can connect with some of the leading names in mitochondrial medicine, interactive Ask the Mito Doc & Researcher sessions, and more.

Full registrations (6/18-20) and single day registrations (6/18, 6/19, or 6/20) are available now at UMDFConference.org.