July 2013: Contact Your Member of Congress Today: Support Usher Syndrome Report Language
In case you haven't heard the good news, the U.S. Senate Committee on Appropriations included our report language in the FY2014 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill. (Click here to view the official language on page 95 of the LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS BILL. "Usher Syndrome. - The Committee urges NEI to put a higher priority on Usher syndrome, the leading cause of deaf-blindness.")
There are still more steps to go, but this is a big one.
Up next, the House needs to submit their version of the bill. We need to push our House members to include the language as well. If both the House and the Senate have the language, we're almost guaranteed it will be in the final bill.
This is a critical step to get NIH funding for Usher syndrome research. Now is the time to write to your member of Congress to let them know you expect their support to ensure the U.S. House Committee on Appropriations includes our language as well.
First, click this link to see if your representative is on the House Committee on Appropriations. If you don't know who your representative is, or whether they're on this committee, click here to find your representative by zip code.
Be sure to write to your representative, even if they're not on the House Appropriations Committee. Every message counts! If your rep is not on the Committee, please urge them to encourage their colleagues on the Appropriations Committee to support the language below.
Once you've located your rep, you can contact them with the following personalized message:
Dear Representative (Name),
I write to encourage you to support language that directs the NEI to give Usher syndrome research a higher priority in the FY2014 Labor, Health and Human Services, Education, and Related Agencies Appropriations bill. Usher syndrome is the leading cause of deaf-blindness affecting about 45,000 Americans. I know this because (I/my son/wife/uncle/etc.) have/has Usher syndrome. In addition to the challenges that come with deafness, (I/he/she) now faces the overwhelming burden of living with loss of sight. (Add briefly to your personal story here.)
Now is the time to end deaf-blindness and other vision related diseases. Thank you for your support.
Click here to email your House Representative now.
You are the key to finding a cure.