Inspiration for the “Seeing is Believing” Charity Race
We cannot believe we are planning our 7th annual Anthony’s Seeing Is Believing 5k/10k Walk-Run. My wife Karrie, and myself Tony Ingram, along with our family and friends started the Anthony’s Seeing is Believing Foundation in 2012. Our goal was to raise awareness about blindness and raise money to help fund research for LCA (Leber’s Congenital Amaurosis). We have hope that researchers will find a cure for LCA and will one day, be able to give our son Anthony sight.
Local time: 10:58 AM
Our journey started when our son Anthony was just 3 1/2 months old and was diagnosed with LCA. We were devastated to hear the diagnosis that our son was blind. We’ve always had our faith & strong support from our family and friends. We took our initial feelings of devastation and focused our energy towards the positive. We were determined to tackle the disease “head on” and provide Anthony with all of the tools he would need to succeed. We have raised Anthony the same way as our two older children. From the very beginning Anthony has had a strong personality and has been very persistent. Anthony doesn’t let any challenge stand in his way and he is always ready to try anything new. He’s always been as comfortable on the playground, in the swimming pool or climbing trees as any sighted child. Anthony reads Braille and is aided with a white cane for mobility. He has been “mainstreamed” since kindergarten in the same public schools as his sisters. Most people that meet Anthony don’t believe he is blind because his is so active and outgoing. He can often be found building with Legos, playing with model trains, playing his piano, drumming on his cajon, singing, playing outside or riding his bike. He loves the beach and enjoys boogie boarding, surfing, paddle boarding and hiking. This year Anthony participated in the Junior Blind Olympics in Los Angeles and earned 5 medals. He participated in Operation Surf and Cane Quest this year as well. For Anthony, everything is a learning experience. Since he could walk he’s been out in the garage helping his dad with metal and woodworking projects, working on cars and he has learned all of the mechanics’ hand tools by feel as well as using power tools. Anthony has played organized teams sports such as soccer, basketball, T-ball and has been learning Jiu Jitsu for 3 years. Anthony is truly an inspiration to us all. Not a day goes by where there’s not a smile on his face, as he looks towards the sun, and has a skip in his step as he runs his way through life.
What is LCA?
Leber’s Congenital Amaurosis (LCA) is a very rare, genetic hereditary disorder that causes severe vision loss and blindness in infants and children. Of all the retinal degenerations, LCA has the earliest age of onset and can be the most severe. There is no known cure for LCA. Anthony suffers from a mutation in the CRX gene, which is the rarest of the 20 known genes. CRX mutation comprises only 1%-3% of the 3,000 cases of LCA in the US.
What treatment is available?
Clinical trials of gene replacement therapy for LCA caused by mutations in the RPE65 are now underway at Children’s Hospital of Philadelphia, Universities of Pennsylvania, Florida and Moorfields Eye Hospital at the University College of London. 7 the FDA’s Cellular Tissue and Gene Therapies Advisory Committee unanimously voted to recommend “Spark Therapeutics’ Luxterna” for regulatory approval. “The vote validates gene therapy as a viable treatment”, Dr. Yoo said. This will be the first time that a genetic therapy has been used to treat an inherited disease in the United States.