Ask the Expert Podcast in Collaboration with RGI

February 7, 2013

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The Siegel Rare Neuroimmune Association collaborated with Rare Genomics Institute to host an “Ask the Experts Podcast”. Rare Genomics Institiute (RGI) is a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. RGI helps patients with orphan diseases initiate and fund personalized research projects through a dedicated crowd-funding platform and a highly selective network of leading academic scientists and commercial institutions across the globe.

Our first Ask the Expert Podcast featuring Dr. Benjamin Greenberg and Dr. Allen DeSena from the University of Texas Southwestern in Dallas, moderated by RGI’s president, Dr. Jimmy Lin was held on February 7, 2013 at 7 pm EST.

The podcast started with a 30-minute discussion of recent developments in technology applicable to rare diseases. Dr. Cathleen Lutz from The Jackson Laboratory discussed how mice are used in scientific research as models for developments in genomics and biotechnology. Specifically, the discussion helped the audience better understand how scientists develop mouse models and how they can be used to advance research for rare diseases.

It was followed by a 60-minute discussion focused on the management of symptoms that affect individuals who have been diagnosed with the rare neuro-immunological disorders (Transverse Myelitis, Acute Disseminated Encephalomyelitis, Optic Neuritis and Neuromyelitis Optica) with Drs. Benjamin Greenberg and Allen DeSena. They answered questions about treatments, symptom management and other questions from the audience.

About Our Guest Speakers

Allen_DeSenaAllen D. DeSena, MD, MPH

Assistant Professor, Department of Neurology at Cincinnati Children’s Hospital Medical Center, OH

Dr. Allen DeSena attended medical school at Loyola-Stritch School of Medicine in Maywood, IL, located in the greater Chicago area. From there, he went on to complete a residency in general pediatrics in New Orleans, LA at the Tulane-Ochsner pediatric program, and he earned his board certification in general pediatrics in 2009. Following his general pediatrics training, he moved to Dallas, TX, where he completed a residency in pediatric neurology at UT-Southwestern Medical Center in conjunction with Children’s Medical Center-Dallas and Parkland Memorial Hospital. During that time, his interest in transverse myelitis and other neuroimmune disorders blossomed, and he pursued further training in those areas. In 2012, he was the recipient of the first James T. Lubin fellowship award from SRNA to pursue a clinical and research career in transverse myelitis and other related disorders. He is the first pediatric neurology fellow to study the rare spectrum of neuro-immunological disorders, with a particular focus on Transverse Myelitis.

Ben_GreenbergBenjamin Greenberg, MD, MHS

Associate Professor at UT Southwestern Medical Center, Deputy Director of the Multiple Sclerosis Program and Director of the Transverse Myelitis and Neuromyelitis Optica Program, Dallas, TX

Dr. Benjamin Greenberg received his Bachelor of Arts degree from Johns Hopkins University and his Masters Degree in Molecular Microbiology and Immunology from the Johns Hopkins School of Public Health in Baltimore, Maryland. He attended medical school at Baylor College of Medicine in Houston, Texas. Then, he completed an internship in medicine at Rush Presbyterian-St. Lukes Medical Center in Chicago, Illinois before going on to his residency in neurology at The Johns Hopkins Hospital in Baltimore, MD. He then joined the faculty within the division of neuroimmunology at Hopkins and became the co-director of the Transverse Myelitis Center and director of the Encephalitis Center. In January of 2009 he was recruited to the faculty at the University of Texas Southwestern Medical Center where he was named Deputy Director of the Multiple Sclerosis Program and Director of the new Transverse Myelitis and Neuromyelitis Optica Program. That same year he established the Pediatric Demyelinating Disease Program at Children’s Medical Center Dallas.

Dr. Greenberg is recognized internationally as an expert in rare autoimmune disorders of the central nervous system (e.g. transverse myelitis, neuromyelitis optica, ADEM and autoimmune encephalitis). He splits his clinical time between seeing both adult and pediatric patients. He routinely consults on the inpatient units of University Hospital, Zale Lipshy, Parkland and Children’s. His research interests are in both the diagnosis and treatment of transverse myelitis, neuromyelitis optica, encephalitis, multiples sclerosis and infections of the nervous system. He is actively involved in developing better ways to diagnose and prognosticate for patients with these disorders. He has led an effort to improve biorepository development and has created uniform protocols for sample handling and analysis. As part of this initiative his research has identified novel biomarkers that may be able to distinguish between patients with various neurologic disorders. He also coordinates trials that study new treatments to prevent neurologic damage and restore function to those who have already been affected. He currently serves as the Director of the Neurosciences Clinical Research Center and is a Cain-Denius Foundation Scholar.