The Usher Syndrome Coalition urges bipartisan, bicameral oversight hearings about the Executive Branch's current and expected actions to illegally restructure the Department of Education, including the Office of Special Education and Rehabilitative Services (OSERS). History has taught us that leaving the enforcement of civil/educational rights laws up to certain states and districts can harm vulnerable communities, especially children with disabilities.

The U.S. Department of Education has made deep staff cuts in the offices that help schools support children with disabilities, including kids with Usher syndrome.

The Usher Syndrome Coalition urges the continuation of funding for four State DeafBlind Projects recently notified that their support will end.

First-time USH Champion shares personal experience advocating for $50 million in Usher syndrome research funding on Capitol Hill.

Urge your Members of Congress to protect vision loss research and newborn hearing screenings. Congress is making big funding decisions that will impact the Usher syndrome community.

USH Champions achieve legislative win: Report Language on Usher syndrome included in the Senate Labor, Health, and Human Services (LHHS) Appropriation Bill for Fiscal Year 2024. The LHHS Subcommittee funds the National Institutes of Health (NIH), the largest public funder of biomedical research in the world.

Meet with your Members of Congress and their staffers to share your story about Usher syndrome, the most common genetic cause of deafblindness, and advocate for Usher syndrome research. 

Your story matters, and it is important for your Senators and Representative to know that Usher syndrome affects individuals and families in their home state, as well as in every state across the country.

The Usher Syndrome Coalition is planning an "USH Day on Capitol Hill" on Wednesday, September 14th to advocate for increased federal funding for Usher syndrome research.

"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.