Dad Meets Senator Rodham Clinton (D-NY) to Discuss Urgent Need for Kidney Disease Research

New York, NY – December 2006 -- New York residents Michael Levine, Vice President of L & L Painting Co., and Joseph Ramaglio, Business Manager of the International Union of Painters & Allied Trades, DC 9 represented The NephCure Foundation at a meeting with Senator Hillary Clinton (D-NY). They met on behalf of Levine’s son Matthew and 50,000 patients affected by Focal Segmental Glomerulosclerosis (FSGS) to discuss the importance of increased funding into kidney disease research.

Matthew was only three years old when he was diagnosed with FSGS. “For a period of time, our son woke up in the mornings swollen like a balloon,” says Levine. A blood and urine sample revealed high levels of protein, indicating a condition much worse than allergies- the family’s initial conclusion. Hence, the family was sent to a pediatric nephrologist who determined Matthew has FSGS, a condition which occurs when the protein leakage (termed Nephrotic Syndrome, or NS) continues unabated and the kidneys scar. There is no cure for this condition and when treatment with steroids and other drugs fails, FSGS eventually destroys kidneys, leaving patients troublesome dialysis and/or kidney transplantation as their last resort for survival. There has been a startling increase in cases of FSGS with a disproportionate number of minority patients. Furthermore, according to “Kidney International”, FSGS is the most common cause of nephrotic syndrome in African American children.

Much has changed in the entire family’s life since they first learned about FSGS which they describe as a “a condition that has caused so much physical pain and emotional turmoil for Matthew and tens of thousands of patients like him.” The family teamed up with The NephCure Foundation, the only organization solely dedicated to support research seeking a cause for FSGS and Nephrotic Syndrome, improve treatment and find a cure.

This past month, Michael Levine advocated for the Foundation and addressed his son’s condition to New York State Senator Hillary Clinton. Levine and Ramaglio urged the Senator to support increased 2007 funding for the National Institute of Diabetes and Digestive and Kidney Diseases.

They encouraged her to request from Congressman Dave Obey, candidate for chair position of the appropriations subcommittee that funds the NIH and the NIDDK, that research dollars for FSGS and NS be increased in fiscal year 2007. They also asked Senator Clinton to contact the NIDDK to ask for a progress report on Program Announcement-06-228, Exploratory Basic Research in Glomerular Disease, that was issued by the NIDDK on March 9th, 2006.

“We proposed to the Senator to support funding in to the first-ever national database/registry FSGS,” said Levine and reminds, “It is time to identify and provide hope for the other Matthew Levines out there.” According to experts, Nephrotic Syndrome and FSGS are increasing, but are misdiagnosed, undetected or unrecorded. While database/registries have helped defeat other diseases, none exists for FSGS. Experts say such a database/registry is a key step toward eventually curing FSGS.

The NephCure Foundation (www.NephCure.org) appreciates the efforts of the Levine family and Joseph Ramaglio and reaches out to Sen. Clinton to thank her for her interest in learning more about Nephrotic Syndrome and FSGS.