August 5, 2022

USH Day on Capitol Hill?

Haga clic aquí para ver este anuncio en español.

Can you join us on Capitol Hill on September 14th?

There are 6 weeks until Usher Syndrome Awareness Day, which falls on Saturday, September 17th this year.

To celebrate, we're planning an "USH Day on Capitol Hill" on Wednesday, September 14th to advocate for increased federal funding for Usher syndrome research.

Will you join us to meet your Members of Congress (and their staffers) to share your story about Usher syndrome, the most common genetic cause of deafblindness? 

Members who sit on the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education and Related Agencies (LHHS) are key to our advocacy efforts, so check the links below:

If you're unable to visit Capitol Hill this September, don't worry! We're planning to revisit our Members in March 2023. You can also plan to visit your Members' district office near you the same week leading up to Usher Syndrome Awareness Day. You'll meet with their staffers, who get the work done!

In this presentation, Krista Vasi shares a brief overview of the Usher Syndrome Coalition's advocacy efforts so far, where we are today, and how you can get involved. Click here to watch Krista's presentation with English and Spanish captions, or click here to watch in ASL.

State Proclamations, Usher Syndrome Awareness Day

There's still time to ask your governor to officially proclaim “Usher Syndrome Awareness Day." Here are the state proclamations that have been received and are pending so far:

2022 Proclamations Received

  1. Illinois (Governor J.B. Pritzker), requested by Heather Clark
  2. Oregon (Governor Kate Brown), requested by Meagan Moore
  3. Tennessee (Governor Bill Lee), requested by John Johnson
  4. Texas (Governor Greg Abbott), requested by Robyn Stidd Culpepper
  5. Virginia (General Assembly), requested by Chelsea Longbottom

Here are the state proclamations that are in the works and who requested them:

  1. Alabama - Dr. Kathleen Thompson
  2. Arizona - Jennifer LeBaron
  3. California - Elaine Marino
  4. Colorado - Janice Satchell
  5. Washington, D.C. - Betsy Mead
  6. Kansas - Robert Cooper
  7. Kentucky - Katie Fromholt
  8. Florida - Lynn Gilpatrick, Sonia Mansukhani, Monica Pruitt & Melisa Shough
  9. Indiana - Bill Laramie
  10. Iowa- Laurie McBride
  11. Michigan - Sarah Turner
  12. Mississippi - Danay Trest
  13. Missouri - Amy Baker
  14. Montana - Mary Kline
  15. Nebraska - Gary Phillips
  16. New Jersey - Carly Fredericks
  17. New York - Michele Tamasi
  18. North Carolina - Cathy Fields
  19. Pennsylvania - Lisa Lopatofsky
  20. Vermont - Rene Pellerin
  21. Wisconsin - Pam Bilyeu & Shari Lee 

If your state isn’t listed, there's still time! Danay’s mission is to go nationwide to spread awareness for our Usher syndrome community. With your support, we can make this happen. If you need any assistance please email Danay at ambassador.ms@usher-syndrome.org.

Be sure to use the hashtag #USHDAY2022 when you get your proclamation!

“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

In this video, Krista Vasi shares a brief overview of the Usher Syndrome Coalition's advocacy efforts so far, where we are today, and how you can get involved. Click the video below to watch Krista's presentation with English and Spanish captions on YouTube. 

Or click here to watch in ASL:

For more information: