Ty Rockey is a regular nine year old boy – except for one thing – he has a condition known as Lebers Congenital Amaurosis Type 1 (LCA1) that has made him blind from birth.
According to his mother Kelly, there is a gene therapy procedure currently in clinical trials that is working to restore sight to others with LCA gene mutations. The clinical trial for Ty’s gene should start within the next few months she said.
“This is something we have been hearing about since the day he was diagnosed and now we are finally at the point where they are doing it – and it is working!” Kelly said.
“Before we started Rock for Retinal Research we held other fundraisers but really wanted to do something that not only was fun and family oriented but something that Ty would enjoy and look forward to every year,” Kelly said. “We brainstormed and a concert was the natural answer. Ty loves music and we could make it an affordable and fun event for families.”
This year’s concert is this Saturday, September 6th from 4 p.m. to 10 p.m. at the Pinecliff Lake clubhouse in West Milford, NJ (1577 Union Valley Road). There will be live music, tricky-tray style raffle prizes and a card reader during the afternoon hours. The suggested donation is $10 for adults and $5 for children under 12.
“We donate every penny raised directly to researchers at the Scheie Eye Institute at UPENN who are working to start an LCA1 trial,” Kelly said.
Guests are encouraged to bring their own food and drinks. Local eateries will also deliver to the clubhouse.
“We love holding Rock for Retinal Research, it is such a beautiful inspiring day,” Kelly said. “We are not only fighting for a cure for Ty but also celebrating him and who he is.”
This year’s band line-up includes:
This week’s posts will tell more about Ty and some of the performers playing for Ty’s cause.