11th Annual USH Connections Conference
July 13, 2019 | USH2019 Philadelphia, Pennsylvania
In July 2019, nearly 400 people from 33 states in the U.S. and 3 additional countries came together at our 11th Annual USH Connections Conference in Philadelphia. It was an incredible day, filled with heartfelt connections with friends, new and old, "realistic hope" in research towards a cure, as well as practical tips on employment and education.
Our USH2019 event featured Keynote Speaker Margaret A. Kenna, MD, MPH. Dr. Kenna is a professor of Otolaryngology at Harvard Medical School, the co-founder of the Cochlear Implant Program, and the Director of the Genetic Hearing Loss Program at Boston Children’s Hospital. Dr. Kenna is a founding member of the Harvard Hereditary Deafness Center and works closely with basic scientists to develop translational therapies for patients with genetic hearing loss.
Dario Sorgato, a traveler and adventurer living with Usher syndrome, was our Featured Speaker from the Usher community. Based on his personal journey and successes, Dario shared tips on how others in the Usher community can pursue their goals and dreams.
Read the conference transcript and check out the presentation slides to learn:
- the critical role of the USH Trust Registry in recruiting for treatments;
- how a drug treatment entering clinical trial could help people with Usher syndrome;
- why participation in a natural history study can help advance research;
- about federal jobs programs that can benefit workers with Usher syndrome;
- practical ways to get educational support for your school-aged child.
Download the transcript and the digital program.
View the presentation slides:
delivered by Margaret Kenna, MD, MPH, Keynote Speaker
Boston Children's Hospital
delivered by Dario Sorgato
Featured Usher Syndrome Speaker
delivered by Susan Schneider, MD
Eloxx Pharmaceuticals, USA and Israel
delivered by Christine Kay, MD
Vitreoretinal Associates, Gainesville, FL
"Qr-421a, an Antisense Oligonucleotide for the Treatment of Retintis Pigmentoa Due to USH2A Exon 13 Mutations"
delivered by Aniz Girach, MD
ProQR Therapeutics, Netherlands
delivered by Lanya McKittrick, PhD & Carly Fredericks
delivered by Ryan Thomason
Adult with Usher syndrome
Join us in 2020
Our first virtual USH Connections Conference, July 6-11, 2020