Witness Testimony by the Foundation’s CEO, Jason Menzo, Addressing the U.S. Senate About Fiscal Year 2026 Appropriations

About the Foundation Fighting Blindness

The Foundation Fighting Blindness is the driving force behind the global effort to develop treatments and cures for blinding diseases. Established over 50 years ago, the Foundation has raised nearly $1 billion nearly all of which has come from private, non-governmental sources to advance research that has led to the identification of more than 270 genes linked to retinal disease and the launch of over 45 clinical trials for potential new therapies. Each year, the Foundation supports more than 104 research grants involving 133 investigators at 92 institutions, eye hospitals, and universities across the United States. The Foundation funds innovative, cutting-edge work in areas such as genetics, gene and cell therapies, and retinal cell transplantation, often serving as the critical bridge between early discovery, proof of concept, and corporate investment needed to move promising treatments into clinical trials and commercialization.

On behalf of the millions of Americans impacted by blinding diseases, we urge you to support robust and sustained funding for the National Eye Institute (NEI) in the Fiscal Year 2026 (FY 2026) Labor-HHS Appropriations bill and continue to affirm NEI’s critical role as an independent institute within the National Institutes of Health.

Why NEI Matters

The National Eye Institute is the nation’s sole federal institute dedicated exclusively to vision research. Its work is transforming the landscape of treatments and cures for diseases such as retinitis pigmentosa, age-related macular degeneration, and Stargardt disease—conditions that collectively affect tens of millions of Americans. To ensure continued progress, Congress must provide NEI with the predictable and strong funding necessary to support high-impact, bold scientific discovery.

• NEI plays a uniquely strategic role in the federal research enterprise.

Its investments have led to groundbreaking advances in vision science—including the first FDA-approved gene therapy for an inherited disease. The eye’s distinctive characteristics, such as immune privilege and bilateral comparison, make it an ideal setting for first-in-human clinical trials. In this way, NEI-supported research is not only restoring sight—it is also laying the foundation for future breakthroughs in precision medicine.

• NEI’s independence as a stand-alone institute is vital.

This structure ensures that vision research receives focused attention and is not deprioritized within broader NIH funding portfolios. Independence allows NEI to make targeted, strategic investments and maintain momentum in developing therapies for diseases that currently have no cure.

• The societal burden of vision loss is immense and costly.

Millions of Americans live with retinal degenerative diseases, including age-related macular degeneration, retinitis pigmentosa, and Stargardt disease. These conditions impose emotional, financial, and healthcare burdens on patients, families, and federal programs. NEI is the only federal institute exclusively dedicated to preventing and treating these conditions.  Furthermore, there is a substantial economic burden associated with vision loss on the US economy, estimated to be $134.2 billion annually. (source https://www.cdc.gov/vision-health/php/data-research/index.html)

• Consistent funding is critical to continued progress.

Biomedical research cannot be turned off and on like a switch. Funding shortfalls force laboratories to close, delay or terminate clinical trials, and drive away specialized talent and infrastructure that are difficult—and sometimes impossible—to recover.

• NEI amplifies its reach through public-private collaboration.

The Institute partners with organizations like the Foundation Fighting Blindness to support a nationwide network of researchers, clinicians, and institutions. These collaborations accelerate progress and deliver tangible benefits to communities in every congressional district.

• Sustained U.S. leadership in biomedical innovation depends on continued federal investment.

NEI has positioned the United States as a global leader in vision science. A failure to maintain this support would open the door for other nations to lead in attracting top scientific talent, commercial opportunities, and intellectual property.

The Broader Case for Investment

Federal investment in early-stage biomedical research is one of the highest-yielding commitments our nation can make. It fuels innovation, attracts private-sector follow-on investment, supports thousands of high-quality jobs, and drives economic activity in communities across the country. In fact, it is estimated that for every dollar the federal budget invests in NIH-funded research, $2.56 in new economic activity is created (source: https://www.unitedformedicalresearch.org/annual-economic-report/).  For many regions, NEI-supported projects represent a major anchor of their local research economy. Pulling back on this investment would not only stall critical progress for patients—it would also risk serious economic disruption in the districts and states where this work is being done.

Our Request

We respectfully ask that the Committee:

1. Provide robust and sustained funding for the National Eye Institute in the FY 2026 Labor-HHS-Education Appropriations bill, and
2. Preserve NEI’s independent status within the NIH.

NEI is a model of targeted, high-impact public investment. Its work is restoring sight, reducing long-term disability costs, driving innovation in precision medicine, and improving lives in every part of the country. Your support ensures that this momentum continues—and that millions of Americans retain hope for a future without blindness.

Thank you for your leadership and continued commitment to biomedical research.

Jason Menzo, CEO
Foundation Fighting Blindness