2nd Annual Precision Mitochondrial Medicine Symposium

Symposium agenda

Morning session: mitochondrial disease clinical care and research

10:00 – 10:10 a.m. - Welcome and introduction

• Marni Falk, MD, Executive Director and Attending Physician, Mitochondrial Medicine Frontier Program (MMFP), Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania

10:10 – 10:40 a.m. - MMFP origins, mission, and updates

• Marni Falk, MD, Executive Director and Attending Physician, Mitochondrial Medicine Frontier Program (MMFP), Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania

10:40 – 11:10 a.m. - MMFP clinical care metrics, activities, and access

• Colleen Muraresku, MS, LCGC, Genetic Counselor and Program Director, MMFP

11:10 – 11:40 a.m. - MMFP clinical research updates: natural history, outcome measure validation, and range of clinical research programs

• Laura Macmullen, MS, Research Project Coordinator, MMFP

11:40 – 12:10 p.m. - MMFP clinical treatment trials updates

• Sara Nguyen, BS-MPH, Research Project Coordinator, MMFP

12:10 – 12:50 p.m. - Live panel discussion and Q&A of session speakers

• Chair: Zarazuela Zolkipli-Cunningham, MBChB, and Assistant Clinical Director, MMFP Assistant Professor, Perelman School of Medicine at the University of Pennsylvania

12:50 – 1:00 p.m. Break

Lunch session: family perspective

1:00 - 1:40 p.m. - Lunch interview session with mitochondrial disease families who participate in CHOP MMFP clinical care and clinical research

• Chair: Dr. Amy Goldstein, Clinical Director, MMFP; Associate Professor Perelman School of Medicine at the University of Pennsylvania

1:40 – 1:50 p.m. - Break

Afternoon session: supporting mitochondrial disease patients and families

1:50 – 2:15 p.m. - Neuropsychologic problems and management options for mitochondrial disease

• Arianna Stefanatos, PhD, Assistant Professor, Pediatric Neuropsychologist, MMFP

2:15 – 2:40 p.m. - Developmental disability in mitochondrial disease: delineating the problem and developing effective strategies

• Laura Adang, MD, PhD, Attending Physician, Instructor of Pediatrics, Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania

2:40 – 3:05 p.m. - Motor developmental delay and disability in mitochondrialdisease: assessments and treatment strategies

• Jean Flickinger, PT, PCS, Physical Therapist, MMFP

3:05 – 3:30 p.m. - Psychosocial challenges in living with mitochondrial diseases: coping strategies

• Kathy Valverde, MS, LCGC, Genetic Counseling Program Director, UPENN

3:30 – 3:55 p.m. - Social work challenges and opportunities to support mitochondrial disease families

• Jane Suback Kennedy, MS, and/or Steven Hrabovsky, MS, Social Workers, MMFP

3:55 – 4:20 p.m. - Live panel discussion and Q&A of session speakers

• Chair: Rebecca Ganetzky, MD, Assistant Professor, Attending Physician, and Diagnostic Lab Director, MMFP; Assistant Director, Metabolic and Advanced Diagnostics; Program Director, Medical Biochemical Genetics; Training Director, Clinical Biochemical Genetics; Assistant Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania

4:20-4:30 p.m. - Summary of CME day and feedback session

• Marni Falk, MD, Executive Director and Attending Physician, Mitochondrial Medicine Frontier Program (MMFP), Professor of Pediatrics, Perelman School of Medicine at the University of Pennsylvania

4:30 p.m. - Adjourn

Evening session (non-CME)

Connecting Pharma and Families in Therapeutic Development Strategy for Mitochondrial Disease

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ACCME Accreditation Statement: Children’s Hospital of Philadelphia is accredited by the Accreditation Council for Continuing Medical Education (ACCME) to provide continuing medical education for physicians.

Approval of AMA PRA Category 1 Credit(s) for this lecture is pending. If approved, physicians can claim CME credit commensurate with the extent of their participation in the activity for free.

Related specialties: genetics, general pediatrics