Saving Sight and Sound’s primary mission is to raise awareness and funding for research and development of cures for vision loss associated Usher syndrome, the most common genetic cause of combined deaf-blindness. Saving Sight and Sound also raises funds to purchase listening devices, such as hearing aids, cochlear implants and FM systems for families in the Tampa Bay area that cannot afford such devices.
Saving Sight and Sound was founded by Greg and Lisa Wilkerson in 2018, shortly after their daughter Emery was diagnosed with Usher syndrome 2A at the age of 11 months. It is the Wilkerson’s hope that, with the support of their family, friends, and community, they can make a meaningful impact on the race to find cures for inherited forms of blindness as well as support the local hearing loss community.
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Usher Syndrome is the most common genetic cause of combined deafness and blindness. It is a combination of Retinitis Pigmentosa and hearing loss.Learn More
More than 400,000 people are affected by this disorder worldwide.
There are about 20,000 people with Usher syndrome in the United States today.
NIH reports that 3%-6% of deaf or hard-of-hearing children have Usher syndrome.
Usher syndrome affects three major senses in the body: vision, hearing, and balance.