Advocate

Now is the time to speak up—Congress needs to hear from you. Here's why:

Potential Devastating Cuts to Vision Loss Research

The White House recently proposed a dramatic 40% cut to the National Institutes of Health (NIH) budget. Equally alarming, the proposal would eliminate the National Eye Institute (NEI) by merging it into a broader neuroscience institute.

These cuts would severely undermine groundbreaking research toward treatments for vision loss.

Newborn Hearing Screening Program in Jeopardy

On April 1st, the U.S. Department of Health and Human Services (HHS) eliminated a branch of the Centers for Disease Control and Prevention (CDC) which supported the Early Hearing Detection and Intervention (EHDI) program. All but one of EHDI’s 8 full-time staff were terminated. 

EHDI helped states coordinate newborn hearing screening and respond to infants who fail the hearing tests. The universal newborn hearing screening program, implemented in the U.S. in the late 1990s, is “a true public-health success story,” with 98% of newborns in the U.S. getting tested before going home from the hospital (CDC data).

Without the EHDI program, some states may lose access to important hearing data and may not be able to continue screening babies for hearing loss or providing the necessary follow-up for babies with hearing loss. Early detection of hearing loss is key to families pursuing genetic testing for Usher syndrome and accessing early intervention tools and resources that help ensure their children can reach important milestones. 

In 2017 and again in 2022, both President Trump and President Biden signed into law the Early Hearing Detection and Intervention (EHDI) Act, reauthorizing EHDI program funding through 2027. One goal of this law was to help improve coordination and make the universal newborn hearing screening program more efficient and effective.

In April 2025, the Trump administration effectively dismantled the EHDI program, despite its authorized funding. 

What can you do?

Members of Congress are home in their districts until Friday, April 25. There is still time to schedule a visit with your representative or their staff in person to talk about these matters. Your voice and story can make a big difference. If you can’t visit, you can still help by calling or emailing their local district office.

Here are your next steps:

1. Enter your full address to find your Members of Congress.
2. Visit your Members’ websites to find the phone number for their district office.
3. Review the talking points below to help strengthen your message. Add your personal stories related to these matters wherever possible.

If you need help navigating this process, please contact info@usher-syndrome.org.

Talking Points

Here are some messages to communicate during your visit or phone call:

1. Protect Vision Research and Keep the NEI
   Usher syndrome causes combined hearing and vision loss. There is no cure yet, and research funded by the National Eye Institute (NEI) gives families hope. Eliminating the NEI or merging it into a broader institute would slow or stop progress for rare diseases like Usher syndrome.
2. Don’t Cut the NIH Budget
   A 40% cut to the NIH would have disastrous effects on medical research, including research into treatments for Usher syndrome. Families are counting on this work to continue. We need more support for medical research - not less.
3. Reinstate the EHDI Program
   EHDI helps states screen newborns for hearing loss and make sure babies who need help get follow-up care. Cutting this program means babies with Usher syndrome will miss out on early services and support when it matters most.