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Looking Back, Moving Ahead

Board Member and a Co-founder of NephCure, Lou Antosh, looks back at the first 10 years, giving us some insight on the start of NephCure and how it has transformed and continues to grow…

It wasn’t a Big Bang that started NephCure. More like rising whimpers from hurting families scattered about in Michigan (The Smoklers), Seattle (The Ortons), and Philadelphia (The Stewarts and Antoshes). We found each other out of desperation, shocked and angered to hear that Nephrotic Syndrome (NS) and FSGS (Focal Segmental Glomerulosclerosis) were researched too little.

When Brad Stewart, my wife and I went to Bethesda, MD, to ask the National Institutes of Health (NIH) why so little was being done, the Feds encouraged us to be advocates. We can’t lobby Congress, they said, but you can. They told us of a few other individuals we might want to contact. As a result, I first heard the voice of Irv Smokler on the phone. He and Brian Orton had chartered an organization. We needed to form a board, to talk about our stories, about fighting for the kids.

There is no NephCure without Irv, whose inner fire raged despite his son’s remission. Long before us, he befriended kidney researchers at the University of Michigan and elsewhere, supported them, learned the lingo. Irv understood our fears. He always asked sincerely how our kids were doing. He knew we needed to find allies in Washington, DC. He asked always “What can I do?” He did a lot.

Very early on, we watched as top FSGS researchers met at the NIH to discuss the NS/FSGS problem and possible battle plan. Irv understood more than me, but one fact was clear: these distinguished doctors didn’t know nearly enough.

The life of a baby is cute in the watching, but boring in the telling. Our infancy had mistakes, stops and starts. The only money for a long time was Irv’s. We held our first patient education day in Philadelphia on the day our daughter was married. I helped set up and left, only to hear later from Brad that one benefactor had handed us a check for $10,000. It seemed a sacred moment, like God telling us: “This is a good thing.”

We moved headquarters from Michigan to a tiny office in New Jersey, searched for an executive director. Henry Brehm showed up and after that no mistakes were big enough to stop us. I can’t figure out why his phone ear is normal sized. Passion, intensity, endurance and more, all in a gentlemanly package. A dynamo whose staff is every bit as amazing as the chief.

The branches sprouted. Melanie, Chrissy and Autumn testified before Congress. Our truly caring advisory board gave us street cred when we exhibited. We had a patient day in Seattle and Brian Orton eventually popped an idea – a motorcycle event that has yielded huge funds for NephCure. The Stewarts threw a beef and beer and others followed suit. It would take thousands of words to list all of you who built NephCure with pain and walk-a-thons and checkbooks. It grew, and the NIH officials watched and said, yes, this is good.

Since, we have dedicated over $6 million towards research – an astounding amount considering where we started, and our growth continues.

Recently, our biggest breakthrough came in the form of NEPTUNE, the Nephrotic Syndrome Study Network. We partnered with research institutions and with $6.25 million from NIH, this five-year, $10.25 million study hopes to open doors to the answers we are looking for.

Until the disease is cut off at its roots, NephCure will grow because it is fed by the desperation and belief and hope of all of you who read this.

Your whimpers shall never be in vain.