UMDF Patient, Caregiver & Family Meeting – Orlando, Florida
April 26, 2018 @ 6:00 pm - 9:00 pm
UMDF Patient, Caregiver & Family Meeting – Orlando, FL
Thursday Evening, April 26, 2018 6pm-9pm
As part of the United Mitochondrial Disease Foundation’s educational program, we are pleased to invite you to a special meeting for affected individuals and their families to provide education and information about mitochondrial disease. Family meetings are also suitable for outreach to clinicians, nurses, therapists, educators, and various allied health professionals.
The format for the family meeting provides information and time for questions and answers. Agenda details to come.
The meeting will be held at Winnie Palmer Hospital, 83 W Miller St, Orlando, FL 32806. The meeting room – Winnie Palmer Hospital Classrooms.
Parking: Guests should use “B” Deck Parking or “Palmer Garage.” Any floor is fine in this garage. Click HERE for parking map.
Arnold Palmer Medical Center Foundation will kick off the evening with an inspiring presentation!
Marni Falk, MD, Children’s Hospital of Philadelphia, Philadelphia, PA
As a board-certified Clinical Geneticist and Pediatrician who initiated and has directed since 2007 The Children’s Hospital of Philadelphia (CHOP) Mitochondrial Genetics Diagnostic Clinic that has grown into the Mitochondrial Medicine Frontier Program, and chair of the Scientific and Medical Advisory Board of the United Mitochondrial Disease Foundation (UMDF), I have amassed a deep understanding of the contribution of a wide variety of genetic etiologies to primary mitochondrial disease across the age spectrum, and the wide range of disorders that involve secondary mitochondrial dysfunction. I have developed effective leadership skills over the last 11 years as organizer and leader of the CHOP/Upenn Mitochondria Research Affinity Group (MITO RAG) that now has 250 active participants; Attending Physician in the CHOP Division of Human Genetics; founding member of the CHOP Center for Mitochondrial and Epigenomics Medicine (CMEM); and Organizer of the international Mitochondrial Disease Sequence Data Resource (MSeqDR) Consortium. I am PI of an active NIH-funded translational research laboratory at the CHOP Research Institute focused on investigating the genetic causes, physiologic consequences, and novel therapies for mitochondrial disease in human patient cells and tissues, as well as in translational model animals (C. elegans, zebrafish, mouse). My CHOP-IRB approved human research study (#08-6177) established in 2008 now has more than 850 enrolled subjects, including cell lines on over 200 individuals with genetically-confirmed mitochondrial diseases. I am also PI for multiple phase II/III clinical research trials of new drug therapies for human mitochondrial disease. These opportunities have further enabled me to develop productive research collaborations to extend the impact of our research, with a wide range of academic, clinical, philanthropic, and commercial collaborators across diverse specialties to better understand the role of metabolism and mitochondrial function in human disease.
Thank you to the Arnold Palmer Medical Center Foundation for supporting this event!
To promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families.