In addition, NephCure hosted a symposium Aug. 31, that focused on the research and treatment efforts for Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome called “Focus on Focal.” More than 600 researchers, pediatric nephrologists and patient families attended Focus on Focal, making it a standing room only event.
“The IPNA Conference, from NephCure’s perspective, was a great success,” said NephCure President Irv Smokler. We raised our visibility and started a buzz among nephrologists and researchers about the significance of our group.”
NephCure continued its education efforts later in the evening, hosting a roundtable discussion that allowed the patients and their families to ask questions of the doctors and researchers to try and get a better understanding of these diseases.
“This was a great opportunity for patients and their families to literally see what’s being done to try and treat and cure these diseases,” said NephCure Executive Director Henry Brehm. “There were a lot of great questions and the interaction between the patients, doctors and researchers is always great to see. Many times patients and their families feel like they are on an island without help. I think this event proved to them that there are many people working to help.”
The week began with NephCure hosting a Saving Kidneys Walk/Run through Central Park. Pediatric nephrologists and kidney disease researchers from 15 different countries participated in the event, helping raise awareness for the conference, kidney disease and The NephCure Foundation.
“The run was a great event that really helped us get in front of the doctors and raise awareness for NephCure,” said NephCure Development Manager Miriam Long, who was on hand to witness the sunrise with everyone else. “The doctors are the key to us finding the patients who can help advocate for more research for FSGS and Nephrotic Syndrome.”
FSGS and Nephrotic Syndrome are conditions that affect the tiny filtering mechanisms in the kidney. The result is that beneficial protein is spilled from the kidney into the urine and lost. Over time this condition can result in renal failure and the need for dialysis or a kidney transplant. The cause for NS and FSGS is not known.
Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, The NephCure Foundation, located in Berwyn, Pa., (Philadelphia area) aims to help science unlock the biological mechanisms that cause these serious conditions and ultimately find a way to cure and prevent them.
