Patients/Families Program
Thursday, June 24 – 6:00pm-7:30pm EDT
Watch Evening of Energy Here>>
Hosted by Brian Harman, UMDF President & CEO, and Philip Yeske, PhD, UMDF Science & Alliance Officer
UMDF invites you to a special virtual event as we honor our mitochondrial medicine heroes and celebrate our 25th Anniversary. The evening will be highlighted by a conversation with past recipients of the UMDF Vanguard Award as they share their perspectives on 25 years of progress and what the future holds for the mitochondrial disease community.
Interested in watching the expanded version of the conversation with our UMDF Vanguard Award Recipients, click the Watch Here below.
Special Guests – UMDF Vanguard Award Recipients
2013 – Salvatore “Billi” DiMauro, MD - Columbia University (special video message)
2014 – Chuck Hoppel, MD - Case Western Reserve University
2015 – Douglas Wallace, PhD - Children’s Hospital of Philadelphia
2016 – Richard Haas, MD - Rady Children’s Hospital/UC San Diego School of Medicine
2018 – Larry Grossman, PhD - Wayne State University
2019 – Bruce Cohen, MD - Akron Children’s Hospital
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UMDF: Celebrating 25 Years – Brian Harman, UMDF President & CEO |
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UMDF Impact - Philip Yeske, PhD, UMDF Science & Alliance Officer |
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Big Pitch Accelerator Grant Program |
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Clinical Trials Panel #1 Discussion – Magali Taiel, MD, Gensight Biologics; Natalie Yivgi Ohana, PhD, Minovia Therapeutics; Matthew Klein, MD, MS, FACS, PTC Therapeutics; and Peter Stacpoole, PhD, MD, University of Florida |
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Clinical Trials Panel #2 Discussion – Magnus Hansson, MD, PhD, Abliva; Fernando Scaglia, MD, Baylor College of Medicine; Chris Winrow, PhD, Cyclerion Therapeutics; and Jan Smeitink, MD, PhD, Khondrion |
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Clinical Trials Panel #3 Discussion – Gerard Marek, MD, PhD, Astellas Pharma; Alex Dorenbaum, MD, Reneo Pharmaceuticals; Jim Carr, PharmD, Stealth BioTherapeutics; and Joanne Quan, MD, Zogenix |
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Genetic Testing Panel Discussion – Arnold Gammaitoni, PharmD, Zogenix; Sean Hofherr, PhD, FACMG, GeneDX; Lukas Lange, PhD, Probably Genetic; Elizabeth McCormick, MS, CGC, Children’s Hospital of Philadelphia, Philadelphia, PA; and Doreen Casali, Adult Mito Patient/UMDF Ambassador |
| View Video | UMDF Supported Infrastructure Panel Discussion – Michio Hirano, MD, North American Mitochondrial Disease Consortium (NAMDC); Amel Karaa, MD, Treat Mito; Sumit Parikh, MD, Mitochondrial Care Network (MCN); and Marni Falk, MD, Mitochondrial Disease Sequence Data Resource (MSeqDR) |
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UMDF Welcome - Brian Harman, President & CEO |
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What is Mitochondrial Disease? Bruce H. Cohen, MD, UMDF Chair, Scientific and Medical Advisory Board, Akron Children's Hospital, Akron, OH |
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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 |
| View Video | LHON Science/Research Panel - Isabel Lopez Sanchez, BSc, PhD, Centre for Eye Research Australia, VIC, Australia; Giulia Amore, PhD, University of Bologna, Italy; Anne Chiaramello, PhD, George Washington University School of Medicine and Health Sciences, Washington, DC; Alfredo Sadun, MD, PhD, University of California Los Angeles, Los Angeles, CA Moderators: Rustum Karanjia, MD, PhD, University of Ottawa Eye Institute, Ottawa, ON, Canada and Lissa Poincenot, LHON Program Chair/UMDF Ambassador |
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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 |
| View Video | Living with LHON Panel |
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Management of Acute Emergencies (ICU) in Primary Mitochondrial Disease – for Traveling and at Home - Divakar Mithal, MDLurie Children’s Hospital of Chicago, Chicago, IL; Rebecca Ganetzky, MD, Children’s Hospital of Philadelphia, PA; and Amy Goldstein, MD, Children’s Hospital of Philadelphia, PA |
| View Video | LHON Community Update |
Teen/Young Adult Programming June/July – More Details to Come
- Monday, June 28 at 8:00pm EDT
8:00p-9:00p – Virtual Art Class led by TEEN Monica Chulewicz. Join us to create a "Work of Art" in your very own home with items you already have on hand. - Tuesday, June 29 at 8:00pm EDT
8:00p-9:00p – Dating and Relationships in Teens and Young Adults living with a Chronic Illness – Teen/Young Adult Panel Discussion. - Wednesday, June 30 at 7:00pm EDT
7:00p-8:00p – Mito Doc Round Table Discussion with Amy Goldstein, MD, Children’s Hospital of Philadelphia. Join us for this special Teen and Young Adult Only (no Parents allowed) Q&A session. This is your opportunity to ask the questions that you need to know as you approach and enter adulthood. - Thursday, July 1 at 8:00pm EDT
8:00p-9:00p – Transitioning in a COVID World for the Mitochondrial Teen/Young Adult with Beth Heuer, DNP, CPNP-PC, PMHS Pediatric Nurse Practitioner. - Friday, July 2 at 8:00pm EDT
8:00p-10:00p – Teen Prom featuring D.J. Jake Maxwell