Patients/Families Program

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)

    General Networking Cannabis IEPs and School LHON

  • 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)

    General Networking Coping Strategies Managing Fatigue LHON

  • 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