From The Coast Star June 4, 2009

Strides for IgA making leaps, bounds; new Texas chapter is being planned

By Dan Zomack

There is only one IgA Nephropathy walk that takes place in the United States, and for the fifth year in a row, it was held right here in Monmouth County — but there may soon be another walk as interest in the event has been piqued in Texas.

While Immunoglobulin A [IgA] Nephropathy may be one of the lesser-known diseases, one local family has been doing its best to spread the word about it as they help raise funds to battle the disease.

Wall’s Schneider family held the walk on Saturday, which also included a run this year. Like the previous years, the event was held at the National Guard Training Center in Sea Girt. There were over 400 participants who helped raise “well over $30,000” said Bonnie Schneider, whose son Eddie, 17, has been diagnosed with IgA.

The event included face-painting, music with a DJ, raffles, auction, prizes and much more.

“It was so awesome,” Mrs. Schneider said of this year’s benefit. “It was a beautiful day and people just came out and supported.”

The event even attracted the Vidosh family of Friendswood, Texas to come up to the Jersey Shore.

Brian Vidosh, 13, was diagnosed with IgA Nephropathy in late April, according to Mrs. Schneider.

Brian’s mother, Edwina, was doing some online research after about 72 hours of cruising the Internet while seeking information on her son’s condition, and she came across the Schneider’s www.stridesforigan.org Web site, Mrs. Schneider said.

Mrs. Vidosh then contacted the Schneiders to learn about IgA and to find out about the benefit walk. Mrs. Vidosh then surprised Mrs. Schneider by informing her she would be traveling to New Jersey to attend the event.

Mrs. Schneider said Brian’s story is very much like that of her son’s.

Nearly five years ago, Eddie, who was a middle school student at the time, was diagnosed with IgA Nephropathy — a disease that does not have a cure.

Having never heard of the disease before, his family sought to find out exactly what IgA is, and what could be done about it. Three years ago Mrs. Schneider formed a walk to benefit IgA Nephropathy research and, to date, they have raised over $100,000 in funds.

IgA Nephropathy is a kidney disorder that damages structures in the kidney that normally would filter urine. The damage leads to blood in the urine, and is a chronic disease that can progress over the course of 10 to 20 years. If this disorder leads to kidney failure, Eddie will have to start dialysis or receive a kidney transplant.

Treatment focuses on slowing the progression of the disease and preventing complications. With proper rest, Mrs. Schneider said Eddie, who is extremely active, can go months without getting very sick. But even something as minor as the common cold can end the period of remission.

In 2005, Mrs. Schneider set up an endowment with the National Kidney Foundation [NKF] in Eddie’s name using funds from the first walk. She said now researchers can apply to use funds from that endowment to further the treatment of IgA Nephropathy, a disease which she said gets very little attention.

Eddie is now a junior at Red Bank Catholic High School, where he runs track, writes for the school newspaper and is president of the environmental club. He also volunteers at a Red Bank soup kitchen.

Mrs. Schneider said her son, who is in the early stages of the disease, has to often have his blood pressure checked to make sure his vitals are OK, otherwise he could fall quite ill.

Though it may be a rare kidney disease, says Mrs. Schneider, people from New York and Virginia have been reaching out to her over the years to find out more about the walk here, because they want to have walks in their own home states.

Mrs. Schneider said she will be visiting those two states to help get them started on their own walks.

In the meantime, Mrs. Schneider said she will be traveling to Friendswood to help establish the Texas chapter of the Strides for IgA Foundation.

“I’ve been waiting for someone to call me who wants to open up the next chapter,” Mrs. Schneider enthusiastically stated.

The Vidosh family wound up spending the weekend in New Jersey, learning about IgA from Eddie and his family.

Mrs. Schneider said the Texas family left New Jersey with more confidence and information than they previously had, which she was thrilled about.

Mrs. Schneider said she wants to be available to families, just like the Vidoshes, and be able to help them in their time of need.

“I’m just Eddie’s mom on a mission,” Mrs. Schneider said.

Over $250,000 has been raised through the local walks, and the National Kidney Foundation is now matching funds, according to Mrs. Schneider.

National Kidney Foundation Vice President for Health Policy & Research Dolph Chianchiano, JD, MPA, recently wrote Mrs. Schneider that, “contributions from Strides for IgA Nephropathy are making it possible for NKF to devote $90,000 in the current fiscal year to support two scientists who are studying this disease.”

John Sanders, MD, who is working at the University of Tennessee in Memphis, as well as Celine Berthier, Ph.D., at the University of Michigan have received research funds.