Rare Disease Report

Usher4UsherSyndrome: Dancing for Awareness

MARCH 29, 2017
RDR Staff

Rebecca Alexander hopes to inspire people to help raise awareness for Usher Syndrome by getting the attention of superstar Usher.

Through her Usher4UsherSyndrome campaign, Alexander invites anyone to submit a video of them dancing to one of Usher's songs and add to the viral campaign to get his attention and educate as many people as possible about Usher Syndrome.

Usher Syndrome is rare inherited disorder that causes hearing loss and progressive vision loss. Persons with Usher Syndrome Type I are completely or severely deaf at birth with night blindness beginning around age 10. Vision loss is due to Retinitis Pigmentosa (RP) that causes the cells of the retina to slowly die. Type II and Type III result in the same deafblindess, but symptoms appear later in the adolescent and teen years.

Rebecca was diagnosed with Usher Syndrome Type III when she was 19. At that time Type III was not yet identified. Thanks to the blood work provided by Rebecca and her family, researchers were able to identify and diagnose Type III.

Rebecca hopes that by spreading awareness the challenge will catch the attention of Ellen DeGeneres. After all, who better to connect Usher to Usher Syndrome than the inspirationally philanthropic host who happens to know him personally? Rebecca hopes that the singer will host a benefit concert to raise money for Usher Syndrome research.

You can check out Rebecca's video here and vote for her video on EllenNation.

Rebecca is not letting Usher Syndrome keep her from living the fullest life possible. She is a psychotherapist in private practice, group fitness instructor/extreme athlete, Lululemon Athletica Ambassador, and a Disability Rights Advocate. Rebecca is also the author of Not Fade Away: A Memoir of Senses Lost and Found, which tells her inspiring story of finding new meaning in her life with Usher Syndrome. In 2015 Rebecca was honored with the Foundation Fighting Blindness Hope and Spirit Award and in 2016 she received the American Foundation for the Blind Helen Keller Achievement Award. Later this year she will be honored with the Bicentennial Alumni award from the University of Michigan and the Eagle Award from the Disability Rights Advocates.

For more information on Rebecca and her journey, please check out her website and hear the story behind the campaign here.

Usher 4 Usher Syndrome

Do you have the moves to get Usher's attention? Check out some the people getting in on the action!
Ava, an 11-year-old girl with Type 1 Usher Syndrome. She spends her free time educating her peers and community about living with Usher Syndrome. Check out her submission here!

Even Usher Syndrome researchers are showing off their moves!



Want to Help Get Usher's Attention?

Follow these simple steps:

  1. Make a video dancing to an Usher song

  2. Share your video using #usher4ushersyndrome

  3. Tag @Usher

  4. Challenge your friends to do the same!


About Usher Syndrome

Usher syndrome affects both the hearing and vision of the diagnosed. It is an orphan disease, affecting approximately 400,000 people in the United States, that presents complete or partial hearing loss at birth followed by progressive loss of vision. Some hearing loss may be helped with the use of Cochlear implants or other hearing aids.
There are three types of Usher Syndrome. Type I children are born completely or severely deaf and suffer from night blindness around age 10. Type II children are also born with hearing impairments, but lose their sight later in childhood or teen years. Type III children are born hearing and lose both their hearing and sight progressively starting in early childhood or teen years.

Editors Note: This article has been updated and corrected to reflect Rebecca Alexander's launch of the Usher4UsherSyndrome campaign.

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