Texas
Family Testifies before Labor Health and Human
Services Subcommittee
to Plead for Kidney Disease Research
Jenna Ryan was diagnosed with Nephrotic Syndrome at the age of six after suffering acute kidney failure
(Washington, D.C.)-- March 13, 2008 –- Six year-old Jenna Ryan, coping with acute kidney failure, asked the Congressional Labor, Health and Human Services Subcommittee (LHHS) for increased federal funding to combat her condition in testimony today on Capitol Hill. Congressman Burgess and Michael Levine accompanied the Ryan's at the testimonies. Congressman Burgess spoke on their behalf and all the people who are dealing with NS and FSGS.
Ryan joined her parents, Lieutenant Colonel John Kevin and Dee Ryan, of Lake Dallas, TX, in telling the committee of the need for further research into the kidney conditions Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS). The Ryans are representing The NephCure Foundation and more then 73,000 patients nationwide that are struggling with these debilitating conditions.
Coincidentally, the testimony came on World Kidney Day, an awareness initiative to emphasize the importance of kidney health. The Ryan family asked Chairman Dave Obey, Democrat from Wisconsin, and the rest of the Subcommittee to significantly increase funding for the National Institutes of Health so that treatments can be found for Jenna and the thousands of other patients with Nephrotic Syndrome and FSGS. They also asked that the Subcommittee support the establishment of a collaborative research network that would allow scientists to create a patient registry and biobank for Nephrotic Syndrome and FSGS and allow coordinated studies of these deadly diseases for the first time. Finally, the Ryan family requested that the Subcommittee urge the National Institute of Diabetes and Digestive and Kidney Disease (NIDDK) to continue to focus on Nephrotic Syndrome and FSGS research in general, consistent with the existing program entitled Grants for Basic Research in Glomerular Disease (R01).
Nephrotic Syndrome and FSGS 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 will result in renal failure and the need for dialysis or a kidney transplant. The cause for Nephrotic Syndrome and FSGS is not known and there is no cure.
“The causes of these conditions are poorly understood,” said Mrs. Ryan, whose husband, Kevin, is an Iraq war veteran. “We are frightened. Jenna’s prognosis is unknown. I am asking you to please significantly increase funding for the National Institute of Health so that treatments can be found for Jenna and others who suffer from these conditions.”
The Ryan family testified on behalf of The NephCure Foundation, the only organization solely committed to seeking a cause and cure for Nephrotic Syndrome 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 conditions and ultimately find a way to cure and prevent them.
Jenna was first diagnosed with Nephrotic Syndrome in October of 2007 after having symptoms of pulmonary edema, tachycardia, hypertension, and pneumonia. Jenna was placed on a strict diet and strong steroid regimen. As a result of Nephrotic Syndrome, Jenna has developed hypercholesterolemia. Common complications with Nephrotic Syndrome include overwhelming infection, blood clots, growth retardation and heart disease.
Kevin Ryan was an active duty Air Force officer in the Office of Special Investigations. He was deployed to fight in Iraq and received a Bronze Star for his heroism in battle. The Ryan family is currently stationed in Stafford, VA.
The Ryan Family also recently met with their hometown Congressman, Michael Burgess. At this meeting they discussed the harsh reality of families affected by these diseases and the need for increased funding and research sponsored by the government into Nephrotic Syndrome and FSGS. To read more about this meeting visit: Ryan Family Meets with Congressman Burgess