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Usher Syndrome Family Conference set July 11

The Usher Syndrome Coalition will present the 7th Annual Usher Syndrome Family Conference on July 11 at the New Orleans Downtown Marriot.
The conference, set for 8 a.m. to 6 p.m., is an opportunity to connect with others impacted by Usher syndrome, engage with researchers and learn the latest about causes, management and treatments of Usher syndrome, according to the Coalition.
Included in the program will be presentations on the progress of neuroprotection, gene therapy, drug therapy and stem cell therapy to treat Usher syndrome, and the role of the Usher syndrome community in the search for a cure.
A family panel discussion, research question and answer session, lengthy breaks and an evening social allow for the opportunity to connect with others impacted by Usher syndrome and engage with researchers who are working towards a cure.
Usher syndrome is the most common cause of combined deafness and blindness. About 400,000 people are affected by this genetic disorder worldwide, with an estimated 50,000 people in the United States.
Children with Usher syndrome are born with or develop hearing loss and may also be born with or develop vestibular issues which adversely affect their balance. Early in life they will experience symptoms of a progressive vision disorder known as retinitis pigmentosa. Initially, they will develop night blindness, followed by a narrowing of the visual field, commonly known as “tunnel vision.”
While there are currently no universally agreed upon treatments for Usher syndrome, there are a number of treatments nearing clinical trial that could potentially help people with Usher syndrome.
The Usher Syndrome Coalition’s mission is to raise awareness and accelerate research for the most common cause of combined deafness and blindness. The Coalition also provides information and support to individuals and families affected by Usher syndrome.
To learn more or to register for the conference, visit www.Usher-Syndrome.org. Cost is $75 for adults which includes breakfast, lunch and an evening social at Mulates, and $25 for children which includes breakfast, lunch and child care for ages 0-8 years or a kids’ outing and evening social for ages 9 plus.
For conference information contact Krista Vasi at k.vasi@usher-syndrome.org.

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