Clinician/Care Giver Session

Thursday, June 24 – 1:00pm-4:00pm EDT
Mitochondrial Medicine Society Platform - Updates in Mitochondrial Disease

Session Chair: Amel Karaa, MD, Massachusetts General Hospital, Boston, MA

  • 1:00   MMS Intro and Updates
    Amel Karaa, MD
  • 1:15   Transitioning From Pediatric to Adult Oriented Health Care for Patients with Chronic Complex Medical Needs
    Reed Van Deusen, MD, MS, University of Pittsburgh School of Medicine, Pittsburgh, PA
  • 1:45   The POLG Paradigm: From Patient to Petri Dish
    Laurence Bindoff MD, PhD Professor, University of Bergen & Neuro-SysMed, Haukeland University Hospital, Bergen, Norway
  • 2:15   Break
  • 2:30   Management of the Stroke-like Episodes in MELAS, Acute and Interictal Phase
    Yasutoshi Koga, MD, PhD, Kurume University Graduate School of Medicine, Kurume, Japan
  • 3:00   Chronic Pain in Mitochondrial Diseases
    Susanne Becker, PhD, Balgrist University Hospital, University of Zurich, Switzerland and Institute of Mental Health, Heidelberg University, Germany
  • 3:30   Live Q&A Panel Discussion
  • 4:00   Closing and Adjourn

Friday, June 25 – 12:00pm-5:00pm EDT

  • Big Pitch Accelerator Grant Program

  • Science & Alliance Updates, Leigh Syndrome Project, Registry and Importance of Clinical Trials

  • Clinical Trials Updates - 3 Panel Discussions

  • Genetic Testing Panel Discussion

  • UMDF Supported Infrastructure Panel Discussion - North American Mitochondrial Disease Consortium (NAMDC), Treat Mito, Mitochondrial Care Network (MCN), and Mitochondrial Disease Sequence Data Resource (MSeqDR)

  • Special Patient Voice Networking Opportunities

Saturday, June 26 at 10am-3pm EDT

  • 10a-10:05a – UMDF Welcome - Brian Harman, President & CEO

  • 10:05a-10:30a – What is Mitochondrial Disease? Bruce H. Cohen, MD, UMDF Chair, Scientific and Medical Advisory Board, Akron Children's Hospital, Akron, OH

  • Break

  • *10:40a-12p – Ask the Mito Doc Panel for the Adult Patient Community
    Panelists: Amel Karaa, MD; Marni Falk, MD; Zarazuela Zolkipli Cunningham, MD; Mary Kay Koenig, MD; Michio Hirano, MD; and Mark Tarnopolsky, MD

  • 10:40-12p – Coffee and Conversation - Breakout Networking Sessions for Parent/Caregivers – (moderated virtual round table discussions – attendees are welcome to move from room to room)

  • Break - 25th Anniversary Moments with UMDF Staff

  • *12:30p-1:50p – Ask the Mito Doc Panel for the Parent/Caregiver Community
    Panelists: Richard Boles, MD; Annette Feigenbaum, MD; Richard Kelley, MD, PhD; Russell Saneto, DO, PhD; Fernando Scaglia, MD; and Irina Anselm, MD

  • 12:30p-1:50p – Coffee and Conversation - Breakout Networking Sessions for Adult Patient Community – (moderated virtual round table discussions – attendees are welcome to move from room to room)

  • Break

  • *2:00p-3:00p – Breakout Sessions Running Concurrently
    • *Mitochondrial Patient Care for the Newly Diagnosed Panel
    • *Management of Acute Emergencies (ICU) in Primary Mitochondrial Disease – for Traveling and at Home
    • *LHON Programming

  • 3:00p – Closing with Final Comments