Together, we are leading the charge against kidney disease FSGS and Nephrotic Syndrome. NephCure is funding the best and brightest researchers, educating patient families across the globe and partnering with pharmaceutical companies to find a cure! Together, we can make a difference.
Let us tell you a bit about Marley. Marley is a very handsome, intelligent, athletic, and caring young man. He can win the heart of anyone with his charm and smile but, more importantly, his empathy for others is genuine.
In 2011, at age 9, Marley was diagnosed with Minimal-Change Nephrotic Syndrome when he was admitted to Children’s Hospital in St Louis after gaining 35 pounds in 4 weeks. For 5 days, they drained fluids from his little body. After 2 years of steroids and anti rejection drugs, Marley did not go into remission, as was typical, and was then diagnosed with FSGS. FSGS is a very ugly beast. The NephCure Foundation estimates that there are currently 19,306 people living with ESRD (End Stage Renal Disease) due to FSGS. It is the most common cause of steroid resistant Nephrotic Syndrome in children and it is the second leading cause of kidney failure in children. About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation. Approximately 1,000 FSGS patients a year receive kidney transplants, however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients. The biggest problem we are facing is that there is not enough awareness and research devoted to FSGS and Nephrotic Syndrome.
Remember the name Marley.....He will be the cure!