Letter to House Energy & Commerce Committee regarding H.R.1262, the Give Kids a Chance Act.

September 16, 2025

The Honorable Brett Guthrie
Chairman
House Committee on Energy and Commerce
U.S. House of Representatives
Washington, DC 20515

The Honorable Frank Pallone, Jr.
Ranking Member
House Committee on Energy and Commerce
U.S. House of Representatives
Washington, DC 20515

Dear Chairman Guthrie and Ranking Member Pallone,

On behalf of the Foundation Fighting Blindness and the millions of Americans impacted by inherited retinal diseases (IRDs), we urge you to advance H.R.1262, the Give Kids a Chance Act, and reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program.

Why this matters now: Many IRDs manifest in childhood and are progressive - meaning each year without treatment can bring irreversible vision loss. Families do not have the luxury of time. The PRV Program has been a market-based, taxpayer-neutral incentive that helps close the investment gap for rare pediatric conditions with small patient populations and high R&D costs. When the PRV lapsed in 2024, the pipeline for children with rare blinding diseases was put at risk.

What the PRV enables:

• Accelerated access: PRVs help speed FDA review without compromising safety standards.
• Investment signal: The voucher creates a tangible return that attracts private capital to pediatric programs that would otherwise not move forward.
• No taxpayer cost: The program advances innovation without new appropriations.

Vision is a pediatric health priority. For children facing conditions like Leber congenital amaurosis or early-onset retinitis pigmentosa, delayed therapy can mean the permanent loss of functional sight, and with it, academic, social, and economic opportunities. Reauthorizing the PRV can help ensure that more children access sight-preserving treatments faster.

For over 50 years, the Foundation Fighting Blindness has been the world's leading private funder of research into retinal degenerative diseases, advancing preventions, treatments, and cures across the spectrum of blinding retinal diseases. We collaborate closely with scientists, clinicians, companies, and patients to de-risk promising approaches and responsibly accelerate development.

We respectfully ask the Committee to:

1. Advance H.R.1262 out of markup with strong bipartisan support; and
2. Preserve the PRV Program's pediatric focus, safety rigor, and taxpayer-neutral design.

We stand ready to support the Committee with technical expertise, patient perspectives, and data as you consider this legislation.

Thank you for your leadership on behalf of children and families living with rare diseases.

Sincerely,

Jason Menzo
Chief Executive Officer
Foundation Fighting Blindness
JMenzo@FightingBlindness.org

cc: The Honorable Michael McCaul