Advocate for Usher syndrome research funding

USH on Capitol Hill

Over the past few years, the Usher Syndrome Coalition's advocacy efforts have resulted in the increased visibility of Usher syndrome on Capitol Hill, Usher syndrome being added as a new category in the National Institutes of Health (NIH) Categorical Spending list, and the inclusion of report language prioritizing Usher research in spending bills. View the latest Usher syndrome report language.

Latest Advocacy News

Take action NOW to let your members of Congress know you're counting on them to reject these cuts and to prioritize Usher syndrome research funding.

Written Testimony of Stacey Breshears of Claremore, Oklahoma Labor, prepared for the Health and Human Services, Education, and Related Agencies Subcommittee of the House Committee on Appropriations.

Today, we are joining forces with patient organizations across the nation to call on Congress to pass the 21st Century Cures Act.

Written Testimony of Anne Croy of St. Louis, Missouri. Prepared for the Subcommittee on Labor, Health and Human Services, Education, and Related Agencies United States Senate Committee on Appropriations Mother of a 29 year old daughter with Usher syndrome Type 2 and a member of the Usher Syndrome Coalition.

Written Testimony of Carmen Marottolo, Jr. of Durham, Connecticut, prepared for the Labor, Health and Human Services, Education, and Related Agencies Subcommittee of the House Committee on Appropriations.

Today, we ask you all to reach out to your representatives to encourage them to sign on to a Dear Colleague letter by Tuesday, March 22nd, supporting Usher syndrome report language.

On March 19, 2015, the Usher Syndrome Coalition, in partnership with the Wynn Institute for Vision Research at the University of Iowa, held a Congressional briefing on Usher syndrome, featuring Edwin Stone, MD, PhD

In March 2015, the Usher Syndrome Coalition signed on to support the 21st Century Cures Act (HR 6), along with the National Alliance for Rare Diseases (NORD) and hundreds of patient organizations.

As a member of the National Alliance for Eye and Vision Research (NAEVR), we applaud the unanimous approval of the bill by the House and Energy Commerce Committee and commend this bipartisan victory for medical research in Congress.

Written Testimony of Muna I. Naash, PhD of Oklahoma Prepared for the Labor, Health and Human Services, Education, and Related Agencies
Subcommittee of the House Committee on Appropriations

Written Testimony of Lanya McKittrick of Washington Prepared for the Labor, Health and Human Services, Education and Related Agencies
Subcommittee of the House and Senate Committees on Appropriations

Written Testimony of Megan Kennedy of Missouri Labor, Health and Human Services, Education, and Related Agencies Subcommittee of the House and Senate Committees on Appropriations

Your letters and phone calls make an incredible impact. Ask your representative to sign on to a Dear Colleague letter by Tuesday, March 24th, in support of Usher syndrome research.

Usher syndrome has been added as a new category in the National Institutes of Health (NIH) Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). We now have visibility into the total federal dollars spent on Usher syndrome.

TELL YOUR CONGRESS MEMBERS: the Usher Syndrome Coalition is coming to Capitol Hill.

Written Testimony of Mark Dunning of Massachusetts Labor, Health and Human Services, Education and Related Agencies Subcommittee of the House Committee on Appropriations

This is a critical step to get NIH funding for Usher syndrome research. Now is the time to write to your member of Congress.

Testimony of Susie Trotochaud of Georgia before the Labor, Health and Human Services, Education and Related Agencies Appropriations Subcommittee of the U.S. House of Representatives Committee on Appropriations.

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