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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:
- Find Your Members of Congress
- Check this list to see if any of your Members sit on these key subcommittees
- Email Krista Vasi if you can join us in Washington, D.C. on September 14th.
- Sign up to Become an USH Champion so we can keep you in the loop!
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
- Illinois (Governor J.B. Pritzker), requested by Heather Clark
- Oregon (Governor Kate Brown), requested by Meagan Moore
- Tennessee (Governor Bill Lee), requested by John Johnson
- Texas (Governor Greg Abbott), requested by Robyn Stidd Culpepper
- Virginia (General Assembly), requested by Chelsea Longbottom
Here are the state proclamations that are in the works and who requested them:
- Alabama - Dr. Kathleen Thompson
- Arizona - Jennifer LeBaron
- California - Elaine Marino
- Colorado - Janice Satchell
- Washington, D.C. - Betsy Mead
- Kansas - Robert Cooper
- Kentucky - Katie Fromholt
- Florida - Lynn Gilpatrick, Sonia Mansukhani, Monica Pruitt & Melisa Shough
- Indiana - Bill Laramie
- Iowa- Laurie McBride
- Michigan - Sarah Turner
- Mississippi - Danay Trest
- Missouri - Amy Baker
- Montana - Mary Kline
- Nebraska - Gary Phillips
- New Jersey - Carly Fredericks
- New York - Michele Tamasi
- North Carolina - Cathy Fields
- Pennsylvania - Lisa Lopatofsky
- Vermont - Rene Pellerin
- 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!
