Usher Syndrome Coalition Educates Congress

Usher Syndrome Coalition Educates Congress

Usher Syndrome Coalition Chairman Mark Dunning (left) and featured speaker Edwin Stone, M.D., Ph.D. (University of Iowa), right, with Cong. David Young (R-IA) who provided a welcome.
Usher Syndrome Coalition Chairman Mark Dunning (left) and featured speaker Edwin Stone, M.D., Ph.D. (University of Iowa), right, with Cong. David Young (R-IA) who provided a welcome.

On March 19, AEVR member Usher Syndrome Coalition held a Congressional Briefing and accompanying Congressional office visits to educate about this most common cause of combined deafness and blindness, which is a rare inherited genetic disorder that affects 50,000 Americans and 400,000 people worldwide. The Briefing featured Edwin Stone, M.D., Ph.D. (Stephen A. Wynn Institute for Vision Research, University of Iowa), who described Usher’s, current research into the genetic basis of the disease, and the potential for a treatment, such as gene therapy.

The National Institutes of Health (NIH) was represented by the National Eye Institute (NEI) and the National Institute on Deafness and Other Communications Disorders (NIDCD). NIH, which has added Usher Syndrome to its Research Condition and Disease Categorization (RCDC) registry, spent $19 million on research Institute-wide last year. The Coalition is developing a roadmap that it hopes will assist NIH in investing those resources in the most promising research.

Coalition Vice Chair Moira Shea commented on her own experiences with Usher’s after Bella Dunning related her current experience as a teenager with Usher’s
Coalition Vice Chair Moira Shea commented on her own experiences with Usher’s after Bella Dunning related her current experience as a teenager with Usher’s
Shefa Gordon, Ph.D., Acting Director of NEI’s Office of Program Planning and Analysis, with Susie Trotochaud, a parent of two children with Usher Syndrome Type 1 (profound deafness at birth followed by blindness in early adolescence) who testified before a March 2013 hearing of the House LHHS Appropriations Subcommittee, along with NAEVR
Shefa Gordon, Ph.D., Acting Director of NEI’s Office of Program Planning and Analysis, with Susie Trotochaud, a parent of two children with Usher Syndrome Type 1 (profound deafness at birth followed by blindness in early adolescence) who testified before a March 2013 hearing of the House LHHS Appropriations Subcommittee, along with NAEVR

AEVR was pleased to attend this event. In 2009, AEVR joined with member organization Foundation Fighting Blindness in holding its first Briefing on Usher’s, featuring William Kimberling, Ph.D. (Boys Town National Research Hospital Center).