Ask Your State to Recognize Usher Syndrome Awareness Day
On July 29, 2015, the Usher Syndrome Coalition worked with United States Senator Ron Wyden and his staff to get the third Saturday of September entered into the Congressional Record as Usher Syndrome Awareness Day. Danay Trest, a Coalition Board Director, took our awareness efforts to the state level. In 2015, Danay submitted a proclamation request to Mississippi Governor Phil Bryant, who has recognized the third Saturday in September as Usher Syndrome Awareness Day each year since. Since them USH community members have requested proclamations at all levels of government, worldwide. Check your local government's website to learn how to apply.
(Danay and Gil Trest with Mississippi Governor Phil Bryant in his office as he signs a proclamation for Usher Syndrome Awareness Day.)
How to Submit a Proclamation Request:
- Find the website of the municipality you'd like to apply to. In the USA, you can find your State Governor's website here.
- Search "how to request or submit a proclamation."
- Submit your proclamation request for approval (sample language below).
If you're unable to find such information, feel free to email Danay at ambassador.ms@usher-syndrome.org.
Here is sample language to get you started:
PROCLAMATION
WHEREAS, Usher syndrome is a rare genetic condition caused by a mutation in any one of at least 10 genes resulting in a combination of hearing loss and progressive vision loss, and is a leading genetic cause of combined deafness and blindness; and
WHEREAS, more than 400,000 people are affected by this genetic disorder worldwide, with at least 25,000 of those in the United States; and
WHEREAS, Usher syndrome, which is currently incurable, impacts three major senses in the body:
Hearing: Children with Usher syndrome are born with or develop hearing loss. It is estimated that upward of 10 percent of babies born with congenital bilateral, sensorineural hearing loss have Usher syndrome.
Vision: Vision loss in Usher syndrome is caused by a progressive vision disorder known as retinitis pigmentosa (RP). RP causes the light-sensing cells in the retina to gradually deteriorate, initially resulting in night blindness, followed by a narrowing of the visual field, commonly known as tunnel vision.
Balance: Balance is achieved and maintained through input from the eyes, the vestibular organs in the inner ear, and the sensory systems of the body, such as the skin, muscles, and joints. Thus, people with Usher syndrome can experience severe balance issues due to vestibular dysfunction; and
WHEREAS, Usher syndrome has no impact on intellectual abilities.
WHEREAS, there are three clinical types: Type 1, Type 2, and Type 3, which are distinguished by the severity and age of onset of symptoms. There are at least ten different genetic subtypes of Usher syndrome, as determined by the causative genes. DNA testing is the only reliable way of determining the true genetic type; and
WHEREAS, because of limited public awareness, those affected with Usher syndrome may experience delayed diagnosis, misdiagnosis, lack of access to services and support, lack of job training and opportunities for employment, and an impact on daily living and mental health; and
WHEREAS, the Usher syndrome community is uniting around the world to spread public awareness and especially to be recognized annually on the 3rd Saturday of September:
NOW, THEREFORE, I, [Government Representative's Name], [Representative's Title] of [Your Municipality], do hereby designate September 20, 2025, as
USHER SYNDROME AWARENESS DAY
in [Your Town, County, Province, Parish, Region, State].
If you have any questions or need assistance, please do not hesitate to contact Danay Trest at ambassador.ms@usher-syndrome.org.
(Copy of the official Proclamation from the State of Mississippi, Office of the Governor)
