Our Autumn Commands Congressional Attention

The Capitol Hill room was packed, the tensions were high and 12-year-old Autumn Conaway, of Burlington, N.J., was about to represent thousands of Americans who seek a cure for Nephrotic Syndrome and FSGS.

Autumn sat behind the microphone in a large Congressional hearing room, ready to describe her battle against kidney disease and to read a letter from another kidney patient, NBA megastar Alonzo Mourning.

Suddenly, the microphone was hers and she looked into the eyes of Congressional committee members.

How did she do?

"She couldn't have been more effective," said NephCure board member Brad Stewart, who introduced Autumn after outlining NephCure's request for increased federal funding for research into the kidney conditions that plague Autumn; hoopster Mourning; Stewart's daughter Melanie, 16, who also sat at the witness table; and thousands of other children and adults.

Members of the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies listened attentively as Autumn told them she now is taking five medications to combat her FSGS.

"Two years ago, I was so ill I could not even finish the fifth grade," she said. "My medications have side effects like making me so tired that it's hard for me to wake up for school, and one even caused me to develop cataracts."

"One of the medications does not allow me to be in the sun, so sometimes I cannot play with my friends."

As Autumn spoke, dialysis patient Melanie Stewart, who has lost her native kidneys and a transplant from her father to FSGS, held a basketball signed by Alonzo Mourning. Mourning, whose NBA career has been sidetracked at times by FSGS, has joined the NephCure effort to promote and fund more research into Nephrotic Syndrome and
FSGS.

"Many of my fans and supporters expressed alarm that FSGS could put me on the sidelines during the height of my NBA career," said Mourning in the statement read by Autumn. "But thousands of children such as Autumn, who haven't had the chance to reach their goals, are going through an extremely difficult time."

After the hearing, one of the subcommittee members, U.S. Rep. Jesse Jackson Jr., (Ill.), met with Autumn and the NephCure delegation. The NephCure party also met with the Stewart's legislator, U.S. Rep. Jim Gerlach (Pa.), U.S. Rep. Chris Smith, of Autumn's district, and a staff member for U.S. Sen. Frank Lautenberg (N.J.).

NephCure's May trip to Congress was part of our ongoing effort to inform Congress about glomerular injury, specifically FSGS. The goals: (1) explain the need for increased funding for research into the causes and treatments of idiopathic Nephrotic Syndrome and FSGS and (2) have Congress urge the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) to give glomerular disease a high priority in the National Kidney Disease Education Program.

In a joint program with NephCure, the NIDDK will match up to $300,000 raised by NephCure to fund a $600,000 project to study the blood, urine and biopsy tissue from FSGS patients in a new clinical trials program. The unique project aims to understand the molecular mechanisms that occur in FSGS and to shed more light on the condition.

Physicians and scientists do not know the cause of many cases of FSGS, including those of Autumn Conaway and Melanie Stewart, and there is no known cure.

You can assist NephCure's effort to urge Congressional action leading to more funding. The best way is to write to or visit your member of Congress (in D.C. or in your home district). If you would like to talk with NephCure about how to do this, please call our toll-free number at 1-866-NEPHCURE.