Usher Syndrome - Individual Cases

Individual Cases

A 31-year-old woman with Usher syndrome, Rebecca Alexander, was profiled in Marie Claire in November 2007. After graduating from the University of Michigan with excellent marks, Alexander went on to Columbia University, where she earned two master's degrees in public health and clinical social work. Rebecca is an active member of her community working with various charities in NYC. Rebecca's dedication as an active member of her community was most notably recognized when she was selected as a "Community Hero" to run with the Olympic Torch for the 1996 Atlanta Olympic Games in honor of her volunteer work for Project Open Hand, a non-profit organization delivering meals to people living with HIV/AIDS in the San Francisco Bay Area. Rebecca received her psychodynamic psychotherapy training through the American Institute of Psychoanalysis. She currently works in private practice specializing in the treatment of mood and anxiety disorders, eating disorders, addictions, disability, and trauma. While currently facilitating group seminars for the Foundation Fighting Blindness during national conferences, Rebecca is also in the process of launching the Usher III Initiative, a non-profit organization dedicated to science and research that seek to find a cure for Usher III. Rebecca teaches indoor cycling/spin classes with a strong following at select gyms in New York City. She was featured on NBC's Today Show on March 20, 2009 which has been nominated for an Emmy award in September 2010. She is the sister of NBC News National Correspondent Peter Alexander.

Christine "Coco" Roschaert is a well-known person with Usher syndrome. She has published video blogs at YouTube, and recently was the kick-off speaker for the Deaf Awareness Week at the University of Vermont. In 2006, she graduated with a degree in Communication Sciences from Gallaudet University; there, she was a hunger striker in the 2006 protest organized by the Gallaudet United Now Movement. Roschaert is now in Nigeria founding the first deafblind program in that country.

A web-community, UsherLife, of people with Usher syndrome was founded on 1 February 2005 by Nick Sturley. Although centered on Great Britain, it offers resources to all people with Usher syndrome. The organization is hosting regular get-togethers in England, such as the Usher Hood Pub in Nottingham and a trip to Brighton pier. Other people with Usher syndrome have posted videos about their lives and condition on YouTube, most notably Ginny Paja-Nyholm. In October 2007, Candice, a mom living in Texas, began blogging about her two daughters, Jasmine and Rebecca; Rebecca has Usher syndrome I.

Catherine Fischer has written a well-received autobiography of growing up with Usher syndrome in Louisiana, entitled Orchid of the Bayou. Similarly, Vendon Wright has written two books describing his life with Usher syndrome, I was blind but now I can see and Through my eyes. Louise Boardman has also written a short book called My son has Usher's Syndrome.

Christian Markovic, an artist living with Usher syndrome, runs a company, Fuzzy Wuzzy Designs.

Spencer Tracy's son John was a well-known person with Usher syndrome who lived a full life. The John Tracy Clinic was founded in 1942 by his mother Louise to offer free help to parents of hearing-impaired infants and preschool children.

Jacob Desormeaux, son of horse-racing jockey Kent Desormeaux, has Usher syndrome. Jacob was born deaf and is progressively going blind. Kent dedicated his race in the Belmont Stakes, which would give him and his horse Big Brown the Triple Crown, to his son Jacob. The family has started an organization to raise funds and awareness of the disease. Usher syndrome is disproportionately common among the Cajuns of south Louisiana, such as Desormeaux and Fischer, because of a genetic mutation among early French Acadian settlers in Nova Scotia.

DNA helix co-discoverer and Nobel laureate James D. Watson has homozygous USH1B mutations, according to his published genome. It is not clear why he did not develop the syndrome. This lack of genetic penetrance argues that expression of the phenotype of Usher syndrome may be more complex than originally assumed.

The Israeli "Nalaga’at" (do touch) Deaf-blind Acting Ensemble consists of 11 deaf-blind actors, most of whom diagnosed with Usher syndrome. The theater group has put on several productions and appeared both locally in Israel and abroad in London and Broadway.