Far-Flung Patients Learn From
Top Docs at NephCure Meeting

Some came by themselves while others brought relatives and children and babysitters. Some came from locations as far away as Australia and London while others zipped in from New Jersey. Some came after years or decades of life with kidney disease while others had diagnoses so recent that they described themselves as “shell-shocked.” They all came with information hunger. They all listened. And they all learned.

Said one person evaluating the recent National Nephrotic Syndrome and FSGS Conference in Philadelphia:

“What’s to improve?  It was awesome….educational, insightful and enjoyable!  So refreshing to be with others who deal with what we deal with on a regular basis.”

The first national conference in the University City Sheraton included two days of graphics-enhanced presentations by numerous NS and FSGS experts, including an official of the National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK), who urged patients and families to work through NephCure for more research funding.

“We at NIDDK can not lobby Congress, but you can,” said Marva Moxie-Mims, M.D., director of Pediatric Nephrology and Renal Centers Programs. She called NephCure a “valuable and engaged partner” in the quest to improve patient outcomes and noted NephCure’s patient outreach and financial support enhancing a national clinical FSGS trial. But advocacy through NephCure was key, she said.

She summed up the relationship between NIDDK and NephCure with a quote from Winston Churchill: “If we are together nothing is impossible. If we are divided all will fail.”

While the two-day conference was chock-full of physician presentations, it also allowed for plenty of interaction between the patient families who came to the hotel as strangers and left as friends joined in a crucial mission.

One woman NS patient expressed her desire to do a children’s book on the topic. A man from Florida needed help – and got it – looking for a nephrologist. Many families asked “What can we do” to raise awareness of the disease and enlist more physicians in the search for a cure. They walked away with ideas and NephCure brochures. A Saturday night reception was buzzing as families shared buffet plates and their personal stories.

“This helps so much,” said one adult patient. “When you learn you have this, you feel so alone.”

The conference was organized by Bernard Kaplan, M.D., Chief of Nephrology of the Children’s Hospital of Philadelphia (and a NephCure Foundation board member), who noted the perhaps-not-coincidental increase in both asthma and NS and FSGS. “Nephrotic Syndrome is the asthma of the kidney,” he said.

Like the other presenters, Dr. Kaplan pulled no punches in describing the limited success of modern scientists in trying to both understand and treat primary NS and FSGS. He likened the dark ages of current NS research to a society in which humans are surrounded by amazing technology and travel in supersonic jets but at the end of the day “we still use candles to light our homes.”

“We have not had a truly significant improvement (in treatment) for NS and FSGS for about 60 years,” said Dr. Kaplan. “All of the other things we have tried have not been proven to be as useful as Prednisone or maybe Cytoxan.”

But the families did hear some good news from NephCure Scientific Advisory Board Chairman Lawrence Holzman, M.D., of the University of Michigan Medical Center, who said scientists are beginning to understand some of the function of a cell with a key role in NS and FSGS – the podocyte. He said the podocyte, which is “at the center of the universe” for the kidney filter, is undergoing much study.

A talk that prompted a great deal of patient and family questions and sharing dealt with the topic of “Adjusting to the Diagnosis of NS/FSGS,” given by Nataliya Zelikovsky, Ph.D., a psychologist at Children’s Hospital.

Each family received a notebook filled with slides of all presentations and other educational materials. (See this link for the list of talks.)

NephCure Executive Director Henry Brehm, whose staff received many compliments on the running of the event, said the conference success confirmed what he has been witnessing in the past year.

“Patients and families are becoming more aware of NephCure and the explosion of interest by researchers and government, and even the media, in this kidney disease that is so devastating to so many people,” he said. “Our phone rarely stops ringing with people who are touched by this condition and are looking for a way to learn or help.

“This was a big step for us and for this disease. To have a federal health official tell us that we must move forward and talk to Congress and the public, that’s quite a mandate. One thing is clear – Nephrotic Syndrome and FSGS will not be defeated unless this movement grows and works to find the cause and cure.”

Click here for information on past seminars.