Advocate

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Written Testimony of Name, City, State 
U.S. House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies

April 16, 2026

My name is <insert name>  and I <am living with Usher syndrome>. Usher syndrome is the most common genetic cause of combined deafness and blindness. It is a rare disease that affects at least 25,000 people in the United States -- and more than 400,000 worldwide. Currently, there are no treatments or cures for Usher syndrome, but that can change with Congressional and Federal Government support. On behalf of the Usher Syndrome Coalition community, I am asking for your support in increasing NIH/NEI (National Eye Institute) funding in excess of $50,000,000 in the FY2027 appropriations bill designated for the creation of the U.S.H.E.R. (Usher Syndrome Healthy Eyes Restoration) Research Program. 

The U.S.H.E.R Program will ensure that funds are solely dedicated to critical research that will lead to the prevention of vision loss in young Usher syndrome patients and the restoration of vision for Usher syndrome patients with significant or total blindness. We are also requesting report language to enhance and prioritize funding for Usher syndrome vision loss research. NIH/NEI should ensure that Usher syndrome research funds are only focused on Usher syndrome given its unique nature. While there are treatments that are viable across certain eye diseases, they cannot be applied to patients whose vision loss is caused by Usher syndrome, necessitating immediate action.

In [Your State], there are an estimated 77 to 300 people with Usher syndrome (Boughman, 1983; Kimberling, 2010). This devastating and life-changing condition affects all of us with Usher and our families. But we each have different stories to tell. 

This is my story: <insert your story here>.

The cost of doing nothing is too great. People with Usher syndrome not only have the capacity to contribute to America’s future, they want to be active members of society. Yet the burden of vision loss in 2025 was estimated to be $199.6 billion - funds our country spent on medical, nursing home, and loss of productivity costs. (National Alliance for Eye and Vision Research). That number is expected to jump to $385 billion in 2032 and $717 billion in 2050 (Prevent Blindness). That does not even include the costs associated with hearing impairment. 
 

The Usher Syndrome Coalition community across the country is aware of and appreciates your support since our report language first appeared in the 2014 omnibus spending bill. However, Usher syndrome must become a higher priority at NIH until we have viable human treatments. Despite past appropriations language urging NIH to prioritize Usher syndrome, funding remains inadequate, and progress toward treatments has been slow. Until 2015, there was no way of knowing how much money NIH invested in Usher syndrome research. Through the efforts of the Usher Syndrome Coalition, this rare disease has been added as a category in the NIH Categorical Spending list, the Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). Through the RCDC system, we now have visibility into the total dollars spent on Usher syndrome, as well as the specific grants that were funded.

While the past five years of RCDC reports (FY2020-FY2024) show funding levels for Usher syndrome ranging from $14 million to $23 million, this is misleading and erroneous. Close examination of these projects receiving these funds reveals that Usher syndrome is not a primary research priority for the majority of these allocated funds. The actual average annual funding for projects that prioritize Usher syndrome has been closer to only $7 million a year. There are not many private funding options for Usher syndrome research given that it is a rare disease. Usher syndrome patients depend on federal government funding if they are to ever have viable treatment options.

As you prepare the Fiscal Year 2027 Labor, Health and Human Services, Education bill, we respectfully request that you include the following report language:

Usher Syndrome.— The committee directs NIH/NEI to fund the Usher Syndrome Healthy Eyes Restoration (U.S.H.E.R) Program in the amount of $50,000,000. Usher syndrome is a rare genetic disease causing combined deafness and blindness affecting 25,000-50,000 people in the United States, for which there is no viable treatment or cure. Due to the disease’s unique nature, the U.S.H.E.R. program must solely focus on vision loss caused by Usher syndrome in order to prevent vision loss in young Usher syndrome patients and the restoration of vision for Usher syndrome patients with significant or total blindness.

The Committee directs NIH to protect and prioritize ongoing Usher syndrome research at NEI and across relevant institutes to ensure progress toward viable human treatment options. The Committee requests an update in the fiscal year 2028 congressional justification, detailing efforts to sustain and stimulate the field despite these challenges and accelerate therapeutic advancements for those with Usher syndrome.

We request support to encourage the NIH to enhance and prioritize Usher syndrome research at NEI. Sufficient federal funding is needed to accelerate critical research: we are asking for Usher syndrome vision-related research funding in excess of $50,000,000 in the FY2027 appropriations bill from NEI for the U.S.H.E.R. (Usher Syndrome Healthy Eyes Restoration) Research Program. This increased funding could lead to as many as three promising clinical trials, accelerate research and bring us much closer to a cure. This will supplement and not supplant existing NIH-supported research activities. 

It is heartbreaking knowing that <my or my loved one’s> condition will only continue to get worse because there is no treatment. Congress must act to ensure NIH/NEI receives the necessary funding to prioritize Usher syndrome research. We ask that the House of Representatives protect and expand NIH’s budget, ensuring that a greater proportion of resources are allocated toward vision loss treatments for Usher syndrome. Increased funding and directive language are necessary to stimulate progress and accelerate therapeutic advancements. Without these efforts, families like mine will continue to wait for treatments that could change lives.

Thank you for reading my story.

[Your Name]