With decreasing federal funding of critical research toward disease prevention and treatment, individual philanthropy matters today more than ever. There is no better example of that than the case of George Perlegos.
Perlegos is a Silicon Valley icon who founded Atmel Corporation, a publicly-traded creator and manufacturer of specialized semiconductors. Back in the early '80s, with the demands of his high-pressured CEO position making him feel extraordinarily stressed, Perlegos scheduled an appointment with his primary care physician.
The results from a battery of lab and other tests led to a diagnosis of IgA Nephropathy, an autoimmune type of kidney disease that is also known as IgAN or Berger's disease. Changes in lifestyle, combined with medications available at the time, were able to keep the patient's creatinine, proteinuria, and blood pressure stable for 25 years. But in 2005 things changed.
The ongoing pressures of work caused increasing levels of proteinuria and blood pressure, leading to a recurrence of IgAN. He was referred to Richard Lafayette, MD, who has been managing Perlegos's disease ever since. Although Perlegos underwent a kidney transplant a few years ago, Lafayette's management enabled his patient to avoid dialysis, "which for all of us is hell," according to Perlegos.
A Silent Disease
Kidney illness can be thought of as a silent disease. Because IgAN is an autoimmune disorder, affected individuals can show no signs of the disease. As a result, Lafayette says that "patients often present very late because they may not notice any symptoms. Treatments are less effective when people present late, so we advise everyone to monitor their blood pressure and watch for any degree of leg swelling or changes in their urine appearance.
"It's really important to get that annual checkup," he adds. "That's when the primary care physician will measure the patient's blood pressure, test their urine, and just make sure that any symptoms the patient has are thoroughly reviewed."
In gratitude for Lafayette's efforts on his behalf, as well as to advance the understanding and treatment of IgA Nephropathy, Perlegos, through the George and Angeliki Perlegos Charitable Trust, has made several significant gifts over the years to support the Stanford Glomerular Disease Center.
Lafayette, a professor of Nephrology in the Department of Medicine, is the founder and director of the Center and its fellowship training program. Glomerular diseases involve glomeruli, which filter waste and excess fluids from the blood.
"The Glomerular Disease Center is focused on a number of quite rare and some ultra rare diseases that affect kidney function ultimately. These diseases contribute to the burden of kidney failure, which is one of the most important health issues and ultimate causes of mortality in the United States," Lafayette says.
Understanding Autoimmune Mechanisms
"Our Center is really geared at understanding the mechanisms that underlie these diseases, particularly autoimmune mechanisms, and trying to look for novel ways of quieting that autoimmunity leading to preservation of kidney structure and function. We want to support patient care and allow for the development of new drugs for these rare glomerular diseases," he explains.
The Center is one of only a dozen or so fully operating glomerular disease centers in the country. Under Lafayette's leadership, it continues to focus on early- and late-stage clinical trials, providing new opportunities to unravel the complex mechanisms underlying kidney diseases and paving the way for targeted therapies and improved patient outcomes while training the next generation of doctors to address these specific aspects of kidney failure.
"Our Center does a lot of patient care and is very involved in clinical trials, but a lot of our learning is built around basic science. And the translational work that we do with colleagues here at the Stanford Institute for Immunity, Transplantation and Infection and at other centers through the world drives a lot of the learning that leads to clinical breakthroughs," Lafayette says.
The Center also works regularly with pharmaceutical companies to find available drugs that can interrupt the process of disease progression. Lafayette and his research colleagues are extremely active in the development of new drugs for IgA Nephropathy, among other diseases, which is of particular interest to Perlegos and is at the heart of his generous gifts.
Annually over 100,000 people worldwide are being diagnosed with IgAN, and we are spending up to $100 billion a year on dialysis, where people's lives become a nightmare. Dr. Lafayette's kidney research on IgA Nephropathy is offering patients a future without dialysis, which is one reason why we are supporting his valuable work.
Driving Translational Science Toward Clinical Breakthroughs
"Those gifts are being well utilized to really push some of this translational science and patient-driven learning," notes Lafayette.
In just the past five years, the work of Lafayette and his colleagues has led to three drugs approved by the FDA that are now available to patients, including sparsentan, Nefecon® and iptacopan, which have been shown to improve outcomes in IgA Nephropathy.
Lafayette's focus has led to many evaluations and better knowledge of how IgAN develops, progresses, and either persists or is resolved.
He remains passionate in efforts to discover safer and more effective treatments for patients. With the help of the Perlegos family and other donors, Lafayette and colleagues plan to expand what we know about immune status during glomerular disease and correlate that knowledge with disease activity and progression. He also intends to continue his work with novel interventions. Furthermore, he aims to grow the number of scientists and clinicians who are serving the population affected by glomerular disease.
As George Perlegos says, "Annually over 100,000 people worldwide are being diagnosed with IgAN, and we are spending up to $100 billion a year on dialysis, where people's lives become a nightmare. Dr. Lafayette's kidney research on IgA Nephropathy is offering patients a future without dialysis, which is one reason why we are supporting his valuable work."
