In late April, the Usher Syndrome Coalition brought together 22 USH Champions on Capitol Hill to advocate for increased federal funding for Usher syndrome research. We met with the offices of 30+ Members of Congress over the span of two days to discuss the urgent need to prioritize the development of treatments and a cure for Usher syndrome. We asked our House Representatives and our Senators to include Report Language about Usher syndrome in the Labor, Health, and Human Services (LHHS) Appropriation Bills for Fiscal Year 2024. The LHHS Subcommittee funds the National Institutes of Health (NIH), the largest public funder of biomedical research in the world.
Thanks to the hard work of our USH Champions, we are thrilled to share that the following report language was included in the Senate FY2024 Labor, Health, and Human Services appropriations bill. The language reads:
Under National Eye Institute (NEI), page 106
Usher Syndrome.—The Committee encourages NIH to enhance and prioritize Usher syndrome research at NEI. The Committee requests an update in the fiscal year 2025 CJ. The update should include efforts to stimulate the field and to accelerate viable human treatment options for those with Usher syndrome.
This tremendous victory is owed to our advocates visiting Capitol Hill in late April and telling their stories, our USH Champions. We're not done yet! Will you add your voice to the chorus?
While we’ve made progress in the Senate, with the inclusion of this language in their report, this is not the final bill. We need your help to ensure it's in the final Appropriations package. We will also continue to push for the Report Language in the House version of the FY2024 LHHS Appropriations bill.
To help, please follow the links below:
- Find Your Members of Congress.
- Use the Sample Letter below to email your Members' offices.
- Become an USH Champion so you can be part of future advocacy efforts!
NOTE: If your Senators or House Representative sits on the Senate or House Appropriations Committees, or even better, the Subcommittees on Labor, Health and Human Services, Education and Related Agencies (LHHS), your voice could be key to our advocacy efforts.
Check this list to see if your Members sit on these key committees/subcommittees. Let us know if they do!
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. Usher syndrome is a rare disease that affects at least 25,000 people in the United States -- more than 400,000 worldwide. Currently, there are no treatments for Usher syndrome, but that can change with increased Congressional and Federal Government support.
[Include a sentence or two sharing your personal story and how Usher syndrome impacts you, your child(ren), or family member(s).]
The Senate has included Usher syndrome in their Report Language in the FY2024 Labor, Health, and Human Services, and Education, and Related Agencies Appropriation Bill. We need your help to ensure this language is included in the final appropriations package.
We hope we can count on the support and help of Representative/Senator [...] to ensure the inclusion of the following Report Language in the final bill for FY2024 Labor, Health, and Human Services, Education and Related Agencies.
The Usher Syndrome Coalition’s appropriations FY2024 report language request:
Usher Syndrome.—The Committee encourages NIH to enhance and prioritize Usher syndrome research at NEI. The Committee requests an update in the fiscal year 2025 CJ. The update should include efforts to stimulate the field and to accelerate viable human treatment options for those with Usher syndrome.
I hope you will help us achieve these advances in finding a cure for Usher syndrome.
Sincerely,
[...]
