Imagine you can only see through a telescope. Now, plug your ears with your fingers. Scary, isn't it?
For children and adults with Usher syndrome this is a reality and not an experiment. Our son, Henry, was born with Usher syndrome. He is Deaf and is now losing his vision to Usher syndrome. Friends and family are helping us to raise money to benefit Usher research to find a cure, which is on the horizon.
Help Henry See and Hear is a New Jersey non-profit corporation that supports individuals and families affected by Usher Syndrome. We support research, provide information, support and social opportunities for those who are deaf and blind due to Usher Syndrome. Our goal is to not only help Henry but to help every man, woman and child who is losing their sight to Usher Syndrome.
Help Henry See and Hear has had an amazing year! Our 1st Annual Summer Event in 2013 was an astounding success. We raised just under $20,000.00! What started as a fundraising event for a 5-year-old Mount Laurel boy with Usher Syndrome has grown into a non-profit corporation with a mission to not only support Henry but all individuals with hereditary deaf-blindness.
Local and national businesses rallied around us to fund research for Usher Syndrome which is the second leading cause of deaf-blindness in the world. We are pleased to inform you that Help Henry See and Hear has filed for its own 501(c)(3) status and we have formed a robust advisory board. We will continue to work closely with The Coalition for Usher Syndrome Research and look forward to supporting those with Usher Syndrome in a variety of ways from social events to support groups.
On July 20, 2014 we will be hosting our 2nd Annual family event at The Flying W Airport and Resort in Medford, New Jersey. Guests will be treated to live entertainment, including the Phillie Phanatic, a meet-and-greet with a Philadelphia Eagles player, deaf-blind simulation games, bounce houses, swimming, a basket raffle with donations from Kitchen Aid, Southwest Airlines, Coach, Walt Disney World, and many more. Of course, all food has been generously donated food from Ponzio's again this year. We expect that the turnout will be close to 500 people and our fundraising goal is $30,000.00.