Schedule at a Glance
Saturday, July 15, 2017, 7:00 am - 5:00 pm CDT
Chicago Marriott Downtown Magnificent Mile
Marriott Ballroom, 4th Floor
Halstead and Marriott Ballroom, 4th Floor
7:00 - 8:30 AM Continental Breakfast and Registration
Continental Breakfast and Registration will be on the 4th floor in the Halstead foyer at the entrance of the Marriott Ballroom.
Mark Dunning, Chairman
Usher Syndrome Coalition
8:30 - 8:45 AM Welcome Address
Mark Dunning is the father of an 18-year-old daughter with Usher syndrome, founding member and Chairman of the Usher Syndrome Coalition, and co-founder of the Decibels Foundation. Mark is also the Global Director of Information Technology for L.E.K. Consulting.
Edwin Stone, MD, PhD, Keynote Speaker
Wynn Institute for Vision Research, University of Iowa
8:45 - 9:30 AM Keynote Presentation: "Curing Usher Syndrome"
Edwin M. Stone is the Director of the Stephen A. Wynn Institute for Vision Research at the University of Iowa
(www.wivr.uiowa.edu). He is well known for his work in defining the genetic basis of blinding eye diseases: ranging from two of the most common causes of blindness, macular degeneration and glaucoma, to much rarer conditions like retinitis pigmentosa and Usher syndrome. Dr. Stone has been very active in removing the technical, legal and financial barriers between genetic discoveries and the patients who could benefit from them. He founded the Carver Nonprofit Genetic Testing Laboratory at the University of Iowa that provides low cost genetic tests for more than 20 different inherited eye diseases to patients in more than 60 countries. His current interest is in developing affordable gene- and stem-cell-based treatments for all molecular forms of inherited retinal disease. Dr. Stone received his MD and PhD from the Baylor College of Medicine and his training in ophthalmology and vitreoretinal surgery at the University of Iowa where he joined the faculty in 1990. He holds the Seamans-Hauser Chair of Molecular Ophthalmology in the University of Iowa Carver College of Medicine.
Featured Speaker from the USH Community
9:30 - 10:00 AM "Life Without Limits - No Barriers"
Bill Barkeley is a deaf-blind adventurer, storyteller and public speaker who speaks with people around the world - those with physical challenges or not - on building a pioneering, adventuring spirit and overcoming the challenges in their lives.
Bill's work is about helping others get to a better place in this world and paying it forward in a life that has been rich beyond his wildest imagination.
10:00 - 10:30 AM Break/Networking
Ian C. Han, MD
Wynn Institute for Vision Research, University of Iowa
10:30 - 11:00 AM "Gene and Stem Cell Therapy for Usher Syndrome"
Dr. Han is Assistant Professor of Ophthalmology in the Wynn Institute for Vision Research at the University of Iowa, Carver College of Medicine. He received his MD from the Duke University School of Medicine, where he was a Howard Hughes Medical Institute research fellow. He completed ophthalmology residency and vitreoretinal fellowship at the Wilmer Eye Institute, Johns Hopkins Hospital, where he also served as Assistant Chief of Service. Dr. Han’s research involves translational models of gene and stem cell therapy for inherited eye disease, as well as advanced retinal imaging for improved understanding of vitreoretinal and choroidal pathology.
Michelle Hastings, PhD
Chicago Medical School at Rosalind Franklin University of Medicine and Science
11:00 - 11:30 AM "The Use of Antisense Technology for the Treatment of Usher Syndrome"
Dr. Michelle Hastings, Ph.D., is an Associate Professor of Cell Biology and Anatomy at The Chicago Medical School at Rosalind Franklin University of Medicine and Science. Dr. Hastings earned an undergraduate degree in biology from St. Olaf College and went on to receive a Ph.D. in biology from Marquette University. She was a postdoctoral and senior fellow at Cold Spring Harbor Laboratory before she joined the faculty at the Chicago Medical School in 2007. She studies the molecular mechanisms of Usher syndrome and therapeutic approaches to treat the disorder using antisense technology. Her work describing an antisense molecule that rescues hearing and vestibular dysfunction in Usher type 1C was one of the first studies to demonstrate the feasibility of recovering hearing and vestibular function in an animal model of a human disease involving congenital neurosensory hearing loss.
11:30 - 1:00 PM Lunch/Networking
Ben Shaberman, Foundation for Fighting Blindness
1:00 - 1:30 PM "The RUSH2A Study: Gaining Insights into USH2A"
For more than 12 years, Ben has been writing stories on science and research for all of FFB’s publications including its Web site, blog, and newsletters. He also presents the latest advancements in retinal research at events and staff meetings. His responsibilities include helping donors one-on-one to understand their conditions, and the steps they can take to manage their vision and potentially gain access to future treatments.
Loyola University Maryland published Ben’s short story collection titled “Jerry’s Vegan Women” in October 2015. Ben’s book of essays, “The Vegan Monologues,” was published by Loyola in 2009. His freelance essays and commentaries have been carried by the Washington Post, Chicago Tribune, National Public Radio, and a variety of other newspapers, magazines, and literary journals.
Ben holds a master of arts in writing from Johns Hopkins University, a master of science in systems management from the University of Maryland, and a bachelor of science in computer information science from Cleveland State University.
1:30 - 2:45 PM USH Research Panel Q&A
2:45 - 3:15 PM Break/Networking
4:45 - 5:00 PM Closing/Usher Community Photo
Join us for food and fun!
Lucky Strike | 322 E. Illinois Street, Chicago
6:00 - 8:00 PM Evening Social
Please join us for food and fun at Lucky Strike located one block from the Marriott at 322 E. Illinois St. Chicago. All are welcome!