USH on Capitol Hill
Advocacy in Action
Over the past few years, the Usher Syndrome Coalition's advocacy efforts have resulted in:
Increased visibility of Usher syndrome on Capitol Hill
Usher syndrome added as new category in the National Institutes of Health (NIH) Categorical Spending listView the latest NIH funding related to Usher syndrome.
The inclusion of report language prioritizing Usher research in spending billsView the latest Usher syndrome report language.
The third Saturday in September entered into the Congressional Record as Usher Syndrome Awareness DayProclaim USH Awareness Day in your state.
In this video, Krista Vasi shares a brief overview of the Usher Syndrome Coalition's advocacy efforts so far, where we are today, and how you can get involved. Click the video below to watch Krista's presentation with English and Spanish captions on YouTube.
Or click here to watch in ASL:
For more information:
- Download the transcript in English
- Ver la transcripción en español
- Download the presentation slides
- Do you have a Member on the Senate or House Appropriations LHHS Subcommittees?
- View the Members of Congress for our USH Champions
Sign up and take action
Join the Usher Syndrome Coalition's team of USH Champions and make your voice heard. You can help ensure Usher syndrome research gets the federal funding it deserves.
Become an USH Champion
“I fight for my son, whose world will go dark and quiet if I do nothing. We have to KICK down the door and make DC hear us. No cure is not an option, never will be.”
Max Hunt, USH Champion, father of a child with Usher syndrome