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, 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.
Saving Sight and Sound’s inaugural Event, Emery’s Scramble for Sight and Sound took place on March 18th, 2019. Thank you to everyone who joined us in raising funds and awareness for this amazing cause! We had a day of great weather, golf, and Usher syndrome awareness. In all, we had 48 sponsorships, 45 raffle, silent and live auction items, and sold out 6 weeks early! Lastly, the final tally is in, and we raised just over $300,000! Because all of our effort is volunteer based, the vast majority of funds raised will go directly to fund Usher syndrome research at the University of Iowa to be matched dollar-for-dollar and locally to children in need of hearing aids. We hope that you will support our organization again next year!
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.