Urge Members of Congress to speed the search for treatments for Usher syndrome

View of Capitol Hill behind trees and warm sunlight

Last month, 15 USH Champions met with the offices of 23 Members of Congress on behalf of the Usher syndrome community. We advocated for two things:

  1. increased federal funding for Usher syndrome, and
  2. innovative clinical trial measurements from regulatory agencies that recognize the rarity, variability and progressive nature of the peripheral vision loss for those who live with Usher syndrome. 

This is just the beginning! Even if you weren't able to join us on Capitol Hill, you can support and strengthen our advocacy efforts by reaching out to your two Senators and House Representative with the same request. Also, you can set up meetings with Members and staff (virtual or in-person at the District Office of your Senator or Representative) to share your story about living with the most common genetic cause of deafblindness.

You are the "who" and the "why" behind our ask to advance critical research benefiting the Usher syndrome community. 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.

Members who sit on the House and Senate Appropriations Committee, especially those who serve on the Subcommittees on Labor, Health and Human Services, Education and Related Agencies (LHHS), are key to our advocacy efforts. These are the Senate and House Committees and Subcommittees that decide on the funding levels for the U.S. Department of Health and Human Services and the National Institutes of Health (NIH). Please follow the links below:

SAMPLE LETTER:

Dear Representative/Senator[...],

We need your help to speed the search for treatments and a cure for Usher syndrome, the most common genetic cause of combined deafness and blindness. Currently, there are no treatments for Usher syndrome, but that can change with increased Congressional and Federal Government support.

[Include 1-3 sentences of your personal story and how Usher syndrome impacts you, your child(ren), or family member(s).]

The Usher Syndrome Coalition is a 501(c)(3) nonprofit organization working to raise awareness and accelerate research for Usher syndrome while providing information and support to affected individuals and families. 

Congressional Action Needed Now:

  • Congressional Action to include $50 million for Usher syndrome research in the FY2024 appropriations bill for the National Eye Institute (NEI) at the National Institutes of Health (NIH) to expedite the development of targeted therapies, particularly those related to vision.
  • Provide an update in the FY2024 Congressional Budget Justification that outlines efforts by the NEI to stimulate the field & accelerate viable human treatment options for those losing vision due to Usher syndrome.
  • Encourage the FDA to immediately consider new technology & innovative measurements to determine effective treatments for rare ophthalmic diseases. Acceptable endpoint measurements in clinical trials must better reflect the slow progression and the loss of peripheral vision in order to help those with Usher syndrome who are going blind now.

We hope you will support including the following report language and the increased funding request in the FY2024 Labor, Health, and Human Services, Education and Related Agencies Funding Bill. These are critical actions endorsed by families in our state and across the country affected by Usher syndrome and working to find a cure. 

The Usher Syndrome Coalition’s appropriations FY2024 report language request:

Usher Syndrome.--The Committee encourages the NIH to enhance and prioritize Usher syndrome research at the NEI. The Committee requests an update in the fiscal year 2024 Congressional Budget Justification. The update should include efforts to stimulate the field and to accelerate viable human treatment options for those with Usher syndrome. In addition, the Committee requests that the FDA immediately consider new technology and innovative measurements to determine effective treatments for rare ophthalmic diseases. Acceptable endpoint measurements must better reflect the slow progression and rare nature of the disease if potential treatments are ever going to be available to patients.

I hope you will help us achieve these advances in finding a cure for Usher syndrome. Please contact me if you have any questions or would like to discuss the need for these legislative actions.

Sincerely,

[NAME]

“I fight for my son, whose world will go dark and quiet if I do nothing. We have to KICK down the door and make DC hear us. No cure is not an option, never will be.   
Max Hunt, USH Champion, father of a child with Usher syndrome