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Advocate for Usher syndrome research funding

USH on Capitol Hill

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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. 

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Are you interested in becoming a government relations advocate for Usher syndrome? Sign up below and we'll email you when it's time to contact your Members of Congress.

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Advocacy in Action

Over the past few years, the Usher Syndrome Coalition's advocacy efforts have resulted in:

Latest Advocacy News

"As an organization formed on the pillars of community and collaboration, the Usher Syndrome Coalition is thrilled to partner with CUREUsher, an alliance we're confident will grow and strengthen our global USH family. The launch of our two-fold collaborative awareness initiative will harness the energies of the USH community and the clinicians who serve them so that one day, everyone with this diagnosis can be supported by a doctor who is knowledgeable about Usher syndrome." - Krista Vasi, Executive Director

Congressman James P. McGovern of Massachusetts in the House of Representatives recognizes Usher syndrome, the Usher Syndrome Coalition and Usher Syndrome Awareness Day.

Urge your House Representative to support the "Eye-Bonds" bill to provide $1 billion of new funding designated for treatments and cures of all causes of blindness and severe vision loss, including Usher syndrome.

Danay Trest submitted a proclamation request to Mississippi Governor Phil Bryant, who recognized September 17, 2016 as Usher Syndrome Awareness Day. Now let's make this happen in YOUR state.

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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