Usher Syndrome Coalition

@ushercoalition.bsky.social

60 Followers 14 Following

A non-profit organization whose mission is to bridge the gap between researchers and the global Usher Syndrome community. www.usher-syndrome.org

USH2A Clinical Trial Webinar May 20th. Usher Syndrome Coalition and Sepul Bio. Join the USH Trust for invite. Bold navy font on gold background with logos of organizations in center in white box. USH logo bottom center.
"International Guide Dog Day" in bold white font on navy background. Circle of guide dog graphics around a circle in gold. USH logo in white above text.
Clinical Trial Update: jCyte Now Recruiting Patients with RP for jCell Therapy Trial, JC02-88
Your story matters. Rare Genes. Usher Syndrome Coalition.
How can you confirm you have Usher syndrome? Genetic testing. Rare Genes, Usher Syndrome Coalition
What are rare genes? Many would say, "genes that are rare." That's true, but it is more than that! A graphic of DNA is centered below the text.
Rare Genes Usher Syndrome Coalition
Short 13-second video. First screen: "Usher syndrome is more than a diagnosis; it's..." Second screen: A white campaign logo floats in from the top right corner: "Rare Genes in bold script, with Usher Syndrome Coalition, displayed below in all caps" against a red background. Third screen: The same campaign logo floats in against a purple background. Fourth screen: The same campaign logo floats against a dark blue background. Last screen: "Usher syndrome is more than a diagnosis; it's Rare Genes."
USH Talks: An Update on the Genetics, Genetic Counseling & Therapies. Dr. Govindasamy Kumaramanickavel, MD Director of Research Narayana Nethralaya Bangalore, India
10 questions today. A future of connections. Join the USH Trust. The USH logo is displayed at the bottom.
Graphic with yellow gold background and all text in navy blue font. “Grounded in Science. Monthly Newsletter. Sign up at link in bio.” Right side has three graphics with text to side. Image of papers and magnifying glass next to “Research Spotlight.” Image of megaphone next to “Science News Feature.” Image of side-facing head with a heart where brain is located next to “On Well-Being.” USH logo in blue and gold is at bottom center.
The text "WORLD HEARING DAY" is displayed in bold, uppercase yellow letters at the center. Surrounding the text are curved yellow and white lines, symbolizing sound waves. At the bottom, there is a white circular USH logo in the center.
Weekly USH Tip. Be My Eyes is a free app for the low vision and blind community that connects users with sighted assistance." White background with navy text. Header in all caps navy font on white and gold background. Photo of hands holding a phone on left with text on right. USH navy and gold circle logo bottom center.
Graphic with yellow gold background. "Cochlear Implant Awareness Day" in navy blue text across the top. Three navy blue fine-line images of different cochlear implants in the middle. USH logo at bottom center.
USH circle logo next to “MERCH. Rep the global USH Community.” Image of five different t-shirt design styles and colors. Yellow box at bottom with “USH Coalition Merch on Bonfire.”
By promoting inclusion and advocating for Deaf and DeafBlind individuals, I strive to create a more understanding and accessible world where everyone, regardless of ability, can achieve their fullest potential. - Dr. Jasmine Simmons In the bottom left corner is a picture of Dr. Simmons, an African-American woman with braids and a big smile. The USH logo and a custom-colored cane shaped into the letter "J" are in the bottom right corner.
"Weekly USH Tip. Flashlights are a multi-purpose tool. For walking in dim/dark places, looking for dropped objects, and more.” White background with navy text. Header in all caps navy font on white and gold background. Photo of a flashlight and beam on the left with text on the right. USH navy and gold circle logo bottom center.
International Day of Women and Girls in Science. Illustration: A female dressed in a lab coat and safety glasses is pointing to a whiteboard with the message, "Celebrate the brilliant women and girls in chemistry, engineering, medicine, and more!" The USH logo is in the bottom left corner.
USH Talks: NAC Attack Clinical Trial for Retinitis Pigmentosa (RP). Speaker: Susie Trotochaud, Executive Director, Usher 2020 Foundation A picture of Susie, a white female with shoulder-length auburn hair, is in the bottom left corner, and the USH logo is in the bottom right corner.
Graphic with navy blue background. Dark font in a white bubble at the top reads “Feb 3-9, 2025” above large white font that reads “Tinnitus Awareness Week.” Graphic of a person frowning with hands over ears and emitting sound waves. The white USH logo is at the bottom left.
Graphic with yellow gold background. Text in bold navy blue "Low Vision Awareness Month." Tunnel vision effect around text in blue and gold. USH logo at bottom center.
Navy blue graphic with a large red snake graphic on the left that has a white outline on one side. Bold white text on the right reads “Happy Chinese New Year!” Below is a white pill shape that reads “Year of the Snake” in navy font. The USH logo is at the bottom center.
Black background with navy blue gradient in bottom right corner. Quote in center in white text that reads: "Darkness cannot drive out darkness, only light can do that. Hate cannot drive out hate, only love can do that." The words "light" and "love" are in gold yellow font color. The USH logo is at the bottom center.
USH Talks: Atypical Usher Syndrome or Usher Syndrome Type 4: Do they even exist? Speaker: Margaret Kenna, MD, MPH Professor, Harvard Medical School Boston Children's Hospital
USH Talks: Delivering the latest research developments and community stories directly to you. Coming soon!