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We need your help to increase NIH funding for research for a cure for Usher Syndrome

A member of the Coalition for Usher Syndrome Research, Susie, testified before the House Labor Health and Human Services subcommittee of the U.S. House Appropriations Committee on the need for increased Usher Syndrome research.  Some members also met with the NIH’s National Eye Institute (NEI) and the National Institute of Deafness and Other Communication Disorders (NICDC) to plan how to prioritize and increase funding for Usher Syndrome research.

In order to make this happen, we need your help NOW! 


Meet with your congressional delegates and senators when they are in town at their local offices.  If they’re unavailable, meet with members of their staff.


Tell your personal story.  Watch or read Susie’s testimony to help you prepare to share your story.


Inform them that they will get a “Dear Colleague” letter asking them to support report language that would increase the amount of NIH funding for research on Usher Syndrome.



See if your congressman is on the House Committee on Appropriations

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jobonner robertaderholt EdPastor SteveWomack AdamSchiff BarbaraLee DavidValadao KenCalvert LucilleRoybal-Allard MikeHonda SamFarr RosaDeLauro AnderCrenshaw DebbieSchultz CWBillYoung MarioDiaz-Balart TomRooney JackKingston SanfordBishop TomGraves MikeSimpson MikeQuigley PeteVisclosky TomLatham KevinYodor HalRogers RodneyAlexander ChelliePingree AndyHarris BettyMcCollum AlanNunelee JeffFortenberry RodneyFrelinghuysen BillOwens JoséSerrano NitaLowey DavidPrice DavidJoyce MarcyKaptur TimRyan TomCole ChakaFattah CharlesDent ChuckFleischmann JohnCarter JohnCulberson HenryCuellar KayGranger FrankWolf JamesMoran JaimeBeutler

See if your senator is on the Senate Committee on Appropriations

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RichardShelby LisaMurkowski MarkBegich JohnBoozman MarkPryor DianneFeinstein MarkKirk RichardDurbin DanielCoats TomHarkin JerryMoran MitchMcConnell MaryLandrieu SusanCollins BarbaraMikulski ThadCochran RoyBlunt JonTester MikeJohanns JeanneShaheen FrankLautenberg TomUdall JeffMerkley JackReed JohnHoeven LindseyGraham TimJohnson LamarAlexander PatrickLeahy PattyMurray