- - Fact Sheet - -NephCure Mission Statement:
The NephCure Foundation is the only organization solely committed to seeking a cause and cure for the kidney diseases Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS). Comprised of patients, their families and friends, researchers, physicians and other healthcare professionals, Nephcure aims to help science unlock the biological mechanisms that cause these serious diseases and ultimately find a way to cure and prevent them. There are over 9000 new diagnosis of FSGS and NS each year which is six times more prevalent in the African American population.
- To provide information, education, support and advocacy, for patients and families dealing with Nephrotic Syndrome and FSGS
- To raise public awareness of these conditions
- To conduct public and private fundraising to provide substantial research grants
- To attract researchers to this field
- To work with the National Institutes of Health and other agencies to increase funding for research
The NephCure Foundation utilizes ambassadors to increase awareness and generate fundraising opportunities. Among the NephCure Ambassadors are:
- Alonzo Mourning - Former NBA star center. Needed a kidney transplant due to FSGS.
- Jesse Jackson, Jr. – Member of the House of Representatives for the second
congressional district of Illinois. Currently on the House Appropriations Committee.
- Herschel Walker – Former NFL star running back.
How is NephCure pursuing its mission?
The NephCure Foundation supports research initiatives working to understand the cause, identify treatments and find the cure for primary FSGS and Nephrotic Syndrome. NephCure has committed $6 million towards research of these diseases in recent years.
NephCure has testified before Congress four times, adding impetus to the federal government’s plans for the most comprehensive clinical trial program to date into FSGS – a $15 million, five-year project studying the effect of various treatments on FSGS patients.
NephCure is also a key part of the National Institutes of Health’s Nephrotic Syndrome Rare Disease Consortium (NEPTUNE), a $10.25 million program which brings together a network of leading institutions in the US and Canada. NephCure has dedicated $2 million plus staff resources during the five-year program, to create a network for collecting patient information, facilitating clinical and observational studies and training future researchers.
What is FSGS?
Focal Segmental Glomerulosclerosis (FSGS) is a disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring. FSGS is one of the many causes of a serious condition known as Nephrotic Syndrome, which occurs when valuable protein in the blood leaks into the urine (proteinuria).
What is Nephrotic Syndrome?
Nephrotic Syndrome (NS) occurs when there is a malfunction in the kidney’s filtering system (glomeruli) causing valuable protein in the blood to leak into the urine (proteinuria). This leakage causes fluid to accumulate in the body and prolonged leakage has been shown to cause kidney failure. One of the most common causes of Nephrotic Syndrome is Focal Segmental Glomerulosclerosis (FSGS); a disease that attacks the kidney’s filtering system, causing serious scarring.
What is the societal cost of this disease group?
The FSGS and Nephrotic Syndrome disease group (defined as Minimal Change Disease, FSGS and Membranous Nephropathy, among others) accounts for approximately 12% of prevalent ESRD cases (2005) at an annual cost in the United States of more than $3 billion.
For more information, please visit www.nephcure.org.
Executive Director: Henry Brehm; x 11; firstname.lastname@example.org
Media Contact: Greg Wiley, x 16, email@example.com