Imagine finding a long-lost relative, one with brothers, sisters, cousins and children of their own. As you explore these new relationships and share experiences, your life (and theirs) becomes richer, more complete. I discovered a kinship of common experience at NephCure's "New Light for Nephrotics" seminar. And I was comforted by meeting patients, parents and physicians who share the frustration that my family has felt since our son Ian was diagnosed with Nephrotic Syndrome in March 2002. (My wife Angela, who stayed home with Ian and our 11-year-old son Jeremy, is looking forward to seeing the seminar on videotape.)

Ian celebrated his seventh birthday, a week after his diagnosis, with half a slice of pizza and some ice cream cake. He doesn't like taking medicine or peeing in a cup, and he's concerned about his future. But for Ian, the food restrictions are the most difficult - especially at school or parties, where other kids eat carte blanche.
Put in perspective, Ian's situation is one that some attendees would relish. He responded to prednisone, but is steroid dependent, with good kidney function and little swelling. Ian has had a few colds and sinus infections, especially since the school year began. He's currently on a protocol of IV prednisone treatments, which has been effective, but has not yet produced a
remission.

Without any relatives near our Scranton, Pa., home, the four of us have become even more dependent on each other than before March. Our feelings, both of love and frustration, have intensified as a result of "Neurotic Syndrome," as I sometimes call this head-spinning paradox of causes, treatments and side effects:

Nobody knows what causes it, but here's what MIGHT work, even though we don't know why. What might work WILL make your son more prone to infections ... which, by the way, are likely to trigger relapses. And the side effects of what might or might not work WILL produce some profound, maybe permanent, changes to your son's body and self- concept. Etc., etc., etc.

Many patients and families of Nephrotic Syndrome have sought information and comfort from each other through the Internet. On this NephCure Web site, you'll read a lot about the efforts of some dedicated physicians who are trying to expose this insidious attacker for what it is.

From my point of view, NephCure is that long-lost relative who has personally connected my family to people who are experiencing what we're experiencing, feeling what we're feeling, hoping what we're hoping - and now, learning what we're learning.

For one day we were not just e-mail addresses in a chat room. For one day we were an extended family who shared something special and who look forward to the next reunion. We are all grateful to Lou and Irv, Melanie and Brad, the other Rob and everyone else trying to shine a "New Light" on Nephrotic Syndrome and make every day a little brighter for the rest of us. Thank you.