If you want to get something done, give it to a busy mom to handle. Nearly four years ago, Bonnie Schneider's tow-headed 13-year-old son Eddie told her his urine was the color of "coca-cola." It was blood. Soon afterward, he was diagnosed with IgA Nephropathy, a progressive and incurable disease that results in the destruction of the kidney filters through inflammation. There is virtually no treatment for the disease which has a fairly clear and tragic trajectory. In most cases, the patient's kidneys fail within a decade or so, requiring dialysis for survival.
For Bonnie, who along with her detective husband, Ed, lives in Wall Township, a New Jersey shore community, the final blow was learning that there was no ongoing research into the disease.
"There really wasn't anyone doing research on IgA Nephropathy—what causes it, how to prevent it or even how to diagnose it earlier, much less how to treat it," says the mother of five, "I got a lot of shoulder-shrugging and head-shaking, but no answers. This was my kid. I had to do something!"
Bonnie, 48, quit her marketing job in New York City and went to work to help Eddie and others like him. Within six months, she had put together a 5K Walk, where more than 1,000 participants raised $40,000. Schneider phoned Dolph Chianchiano, Senior VP for Research at the National Kidney Foundation and said, "I have 40 grand burning a hole in my pocket and I want to bring it to you, but I want it earmarked specifically for IgA Nephropathy!" Who could argue with this mom? In May, Schneider hosted the fourth annual walk and for the first time, runners participated. So far, the event has raised nearly $100,000 for IgA Nephropathy research.
Celine Berthier at the University of Michigan has been the recipient of a NKF Young Investigators grant to study IgA Nephropathy. "I'm going to visit her in the lab," says Schneider. "I don't want to breathe down her neck. She knows what she's doing. I just want to meet her and let her know that these aren't just cells in a petri dish. This is a disease that affects Eddie!" For his part, at 16, Eddie is a high-achieving and beloved student at his parochial school. He loves to surf and longs to grow up and work for his hero, Apple founder Steven Jobs. "Everybody loves Eddie," says his mom. "Teachers, parents, kids. And Eddie likes everybody. Except me. He's not crazy about me right now. But, hey, he's 16."