Ask Congress to Support $1 Billion in Eye Research

July 26, 2018

We want to advise you of a very important development that should greatly expand the financial investment and scope of Usher syndrome research and other retinal degenerative diseases. On July 18, 2018, a bipartisan bill titled the Faster Treatments and Cures for Eye Diseases Act was introduced into the House of Representatives (H.R. 6421).

This legislation allows for the creation of new financial instruments called "Eye-Bonds" which will provide $1 billion of new funding specifically designated for treatments and cures of all causes of blindness and severe vision loss. These funds would be backed by a limited federal guarantee. Given current federal deficits, this guarantee has been carefully constructed to ensure that it works for all of us and would not increase the budget. This will encourage badly needed funding for Usher syndrome research at universities, private labs, etc.

We need to gather extensive support for the Bill. Your action makes a difference! Write or call your Member of the House of Representatives to ask them to support H.R. 6421. Cosponsors of the bill are: Pete Sessions (TX), Sanford Bishop (GA), Fred Upton (MI), and Gus Bilirakis (FL). (Read the Usher Syndrome Coalition's formal letter of support to the four cosponsors.)

Enter your zip code here to get contact information for your House Representative.

This legislation, which has bipartisan support, would significantly increase funding for translational biomedical research, meaning promising research "from bench to bedside" that will speed development of treatments and cures for all eye conditions, including inherited retinal diseases.

See this press release from the Foundation Fighting Blindness for more details on the bill.

Here are some tips for contacting your House Member:

  • Enter your zip code here to get contact information for your House Representative.
  • Contact your House Member by phone or by email - you will be counted either way.
  • Tell him or her your name, contact information, and where you live in the district.
  • Ask them to support H.R. 6421, the Faster Treatments and Cures for Eye Diseases Act.
  • Your personal stories make a memorable impact on representatives and staffers. Let him or her know that retinitis pigmentosa caused by Usher syndrome affects you and your family, and why cures for blindness are so important to you.
  • Mention that Eye-Bonds has bipartisan support, will not increase the budget and can be a research-funding model for advancing cures for other diseases like Alzheimer’s and Parkinson’s diseases.
  • Thank him or her for supporting this critical legislation!

You have a powerful voice. Thank you for using it.