During a routine visit to her pediatrician, 10-year-old Valen Cover was told her blood pressure was abnormally high. Because of her family’s history with polycystic kidney disease, doctors performed an ultrasound and detected cysts covering both her kidneys. Cover had PKD.

“I didn’t know what this meant, but my mom did,” Cover said. “She had passed along this horrible disease, which had affected everyone in her family, to her little girl.”

Cover would struggle with PKD, the world’s most prevalent, life-threatening genetic disease, for almost a decade, receiving a transplant in 2002 at age 19. Now a 24-year-old resident of Red Lyon, Pa., Cover gave an emotional retelling of her life during a briefing March 30 hosted by the PKD Foundation and the Congressional Kidney Caucus (CKC) on Capitol Hill in Washington, D.C.

Along with Cover, Dr. Ted Steinman, a professor of medicine at Harvard Medical School, and Dan Larson, president and CEO of the PKD Foundation, took part in the briefing. The briefing was attended by Congressional staffers from key House and Senate committees that deal with federal funding for disease research. The federal government has spent almost $274 million on PKD research through the National Institutes of Health and other agencies.

Steinman spoke about the advances in PKD research in the past decade and how PKD is a prime example of how investing in research can produce remarkable progress in finding treatments for disease. It was only 12 years ago that the genes that cause PKD were first discovered. Now, there are 14 clinical trials in humans underway or about to start.

Larson gave a general overview of PKD and its effect on families and the health care system. PKD is a disease that is still not as well known as other common, but far less prevalent, genetic conditions like cystic fibrosis or Down Syndrome.

“This was an important opportunity to educate Congressional staff about the devastation caused by PKD and what it costs each of America’s 435 Congressional Districts,” Larson said. “PKD is a case study of how the federal government can work with private industry and the research community to develop breakthrough therapies and treatments for a variety of diseases.”

The PKD Foundation was invited to brief the CKC in late 2006. The bipartisan organization was founded by Reps. Jim McDermott (D-Wash.) and Mark Kirk (R-Ill.) in 2002. The caucus educates Members of Congress and the public about the challenges kidney disease poses to our society. There are about 60 Representatives in the CKC.

The Kidney Caucus provides a forum for the discussion of quality of care and quality of life issues, acts as a resource on the scope and impact of kidney disease and serves as a source of information on public policy initiatives to aid individuals with chronic kidney disease and irreversible kidney failure.

Photo Captions:

Top Left: Valen Cover and PKD Foundation President and CEO Dan Larson both addressed PKD policy issues at the Congressional Kidney Caucus Briefing.

Middle Right: They were joined by Russ Mueller (left), retained counsel for the PKD Foundation, and Ted Steinman, MD, (right) a Professor of Medicine at Harvard Medical School and Beth Israel Deaconess Medical Center. Dr. Steinman is also a PKD Foundation Board of Trustees member and former chair of the Scientific Advisory Committee.

Bottom Left: Valen Cover shares her emotional experiences with PKD.