About Usher Syndrome
Usher syndrome is a genetic disorder causing various degrees of congenital hearing loss and deafness, a progressive debilitating vision disorder known as retinitis pigmentosa (RP), and in many cases, vestibular dysfunction. Usher syndrome is the leading cause of deaf-blindness in the western world. Hearing aids and cochlear implants are often successful in hearing loss. To date, no proven therapies exist for RP. This presentation offers talks that emphasize both research and living with Usher syndrome.
Intended Audience
Families of children and adults with Usher syndrome, ophthalmologists, otolaryngologists, geneticists, genetic counselors, teachers of deaf-blind, and service providers.
Program Objectives
Participants will:
1. Learn about current research and therapies for Usher syndrome.
2. Understand and navigate current and upcoming clinical treatment trials.
3. Network with other families and professional regarding Usher syndrome.
4. Learn about research and treatments for Usher syndrome.
5. Identify strategies for living with Usher syndrome.
Cost: $25 for an individual, $50 for a family (includes lunch)
Additional Information
Childcare and special requests must be received no later than Friday, June 29th. Group rates under the name "Usher Syndrome Family Conference" are available at the
Chase Park Plaza Hotel, $139 per night. To book group rates online, use access code
10N02O (one, zero, letter N, zero, two, letter O). Or book by phone, (314) 633-3014 or toll-free (877) 587-2427.For additional questions, contact Krista Scheall at k.scheall@decibelsfoundation.org or 617.784.8818.
Agenda
8:00 - 8:45 Registration
8:45 - 9:00 Greetings and Introductions
9:00 - 10:00 Dr. William Kimberling, University of Iowa –“Usher Syndrome: Close to a Cure?”
10:00 - 10:30 Break/Networking
10:30 - 11:30 Dr. Margaret Kenna, Children’s Hospital Boston – “Progressive Hearing Loss and Usher Syndrome – What Do We Know?”
11:30 - 12:45 Lunch/Networking
12:45 - 1:45 Dr. Stephen Rose, Chief Research Officer, Foundation Fighting Blindness – “Usher Research Supported by the Foundation Fighting Blindness”
1:45 - 2:15 Mark Dunning, Executive Director, Coalition for Usher Syndrome Research – “The Usher Syndrome Registry and You”
2:15-2:45 Break/Networking
2:45 - 4:15 Family Panel
4:15 - 4:30 Good-Byes
6:00 - 8:00 BBQ in the Park
Things to do in St. Louis:
There are a number of families with children and teens attending the conference on July 7th in St. Louis. Here are some things to do while you're in town.
City Museum
Fair St. Louis (at the Gateway Arch)
St. Louis Zoo (which is free)
St. Louis Art Museum
Missouri Botanical Gardens (and Lantern Festival)
...and the St. Louis Cardinals are in town!
