This past November, NephCure President Irving Smokler, Ph.D., presented to a large NephCure gathering this update on scientific research.

"Distinguished guests, ladies and gentlemen, I would like to give what you might call a battle report from the field about our war on Nephrotic Syndrome and FSGS.

How did this war start? Like so many of the patient families out there, the Smokler family just woke up to it. You, parents of young patients remember how your son or daughter woke up one morning with puffy eyes. Then it happened again and again.

Suddenly a doctor is telling you about these one million filters in each kidney and how they are not working in your case. Protein is being lost in waste fluid. The filters are in danger of being scarred and the kidneys could be destroyed.

That’s the nightmare of FSGS.

What I want to report tonight is that, like you, the United States government finally has awakened to Nephrotic Syndrome and FSGS. Here’s an amazing statistic – In 1980, the federal reports showed only 36 cases of FSGS causing kidney failure. Thirty six cases.

We know now that there were more cases back then, but the entire system failed to report them. No one was paying that much attention to FSGS in 1980.

Now fast forward to this year. It’s a new world with new statistics.

Just like your sick child’s eyelids, those 36 cases of FSGS have swollen to a disturbing degree. The very recent federal report lists more than 2000 cases of FSGS kidney failure annually.

And guess what? That figure is way, way off, according to experts we respect. It easily is twice that. Oh, and then double it again to include the FSGS patients who have not lost their kidneys.

Officially, there were more than 73,000 FSGS patients dealing with loss of their kidneys in the last 5-year reporting period. That is up 68 percent from the previous period.

But many FSGS patients, like some of you, have not lost your kidneys.

The real number of patients is far greater, certainly at the hundreds of thousand level. Hundreds of thousands of patients. This condition simply has exploded.

But this report is not on a battle lost. So let me tell you what will be happening Monday morning, when you go about your daily routine, in research labs throughout the country.

First, the federal government will be spending some $15 million – the first significant federal money spent on FSGS – for the FSGS clinical trial. It is recruiting 500 patients to measure the effects of two drugs and follow their well-being.

If the patient fails on the drugs, the plan is to try an alternative therapy for the patient. You can read about this on the NephCure web site at www.nephcure.org.

Secondly, there is a strong wave of genetic research into FSGS that washing over not just the country but the world. Genes are being discovered that cause the condition when they are mutated. By understanding the molecular activity at this genetic level, scientists can get closer to figuring out the cause and cure.

NephCure is blessed in having at least three of our Scientific Advisory Board members who have gained recognition for their genetic breakthroughs.

Third, aside from the large clinical trial, there are at least six other federal FSGS studies that are looking to recruit patients. (Again, see our web site). The aim – find something other than the old steroid treatments for FSGS that do not work for so many patients.

One drug being investigated is one many of you know - -- Retin A – the acne medication. This derivative of Vitamin A may – and the MAY is why it is a trial -- have a mechanism to combat FSGS.

There also are trials looking into how well anti-fibrotics – drugs that stop scarring – can defend kidneys against FSGS.

Finally, NephCure is meeting with the NIDDK – the federal agency dealing with kidney disease – to jointly map out a new research plan.

The NIDDK has pledged to match every dollar contributed by NephCure to a research fund that will seek important new directions. We are focusing on FSGS because our experts say that probably will yield benefits against Nephrotic Syndrome as well.

So, dear friends, there is hope as we face an increase in FSGS cases.

There are brilliant scientists on the case, many of them on the NephCure Team. There federal officials wanting to help us.

There is a small but excellent NephCure staff guiding a growing number of dedicated patients, parents, families and friends putting together important events such as this evening.

There is, ladies and gentlemen, hope. I leave you with a brief but powerful quote from the late anthropologist Margaret Mead, who said

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.

Thank you for the support you have shown tonight. Thank you for your good thoughts.

And, on behalf of those patient families out there among you, thank you for your commitment. You are helping to change their world and give them a future."