Gaining Momentum: Serafinis and NephCure Rally in D.C. to Push Kidney Disease Bill HR 6790 Forward
By Autumn Gavlock
LOCK HAVEN – Renee and Bill Serafini recently joined forces with the respected advocacy organization NephCure for a significant push in Washington, D.C., aimed at advancing the New Era for Preventing End-Stage Kidney Disease Act, also known as HR 6790. Introduced in 2022 and reintroduced in 2023, this critical legislation seeks to address the growing challenges faced by patients with rare and chronic kidney diseases.
The Serafinis, whose son Gino has been battling Focal Segmental Glomerulosclerosis (FSGS), a severe and incurable kidney disease, have dedicated themselves to ensuring the bill’s passage. FSGS, which causes damage to the kidney’s filtering units, leaves patients with few treatment options and often leads to significant health complications and high healthcare costs.
Their combined efforts were prominently showcased during “Rare Kidney on the Hill,” an event organized by NephCure to mobilize support for kidney disease legislation. NephCure is committed to shaping the future of RKD by empowering patients to manage their health and spearheading advancements in research, treatments, and care. Together they strive to help everyone affected by RKD thrive, making daily progress towards a cure.On that day, 68 advocates from 22 states rallied at the Capitol in support of these critical efforts.“Our trip to D.C. was a crucial step in our campaign,” said Renee Serafini. “We met with key members of Congress and engaged in discussions about the bill’s importance. We’re determined to push for its passage before the end of the year.”
During their visit, the Serafinis participated in several strategic meetings. On Wednesday, July 24, they attended a team dinner to prepare with their Pennsylvania team. The following day, they met with members of Congress and concluded their efforts with a Rally Dinner in the Capitol Building, where they engaged with staff representatives from two House members currently sponsoring the bill.
Support for the bill has already been secured from Pennsylvania Representatives Susan Wild and Glenn Thompson. They are now working to gain further backing, with hopes that Senator Bob Casey will introduce the bill to the Senate. “It’s vital for us to gain more support in the House to ensure the bill can move forward to the Senate,” Renee Serafini explained. “We need help from all 50 states to make this happen.”
The New Era Act aims to transform the way kidney disease is managed, shifting focus from costly late-stage treatments to early detection and prevention. By addressing gaps in diagnostic measures and improving the overall care system, the bill seeks to enhance outcomes and reduce healthcare costs for patients.
The bill’s journey has faced challenges, and with the congressional year ending soon, the Serafinis and their supporters are urging voters to contact their House and Senate representatives. They emphasize the importance of having the bill fresh in legislator’s minds as they return from their August recess.
The Serafinis, working alongside NephCure, have significantly advanced this advocacy effort, highlighting their dedication to reforming kidney disease treatment and improving care for those with rare and chronic conditions.“We’re optimistic and hopeful,” said Renee Serafini. “With continued support and advocacy, we believe this bill can make a real difference.”
To support the New Era Act, contact your representatives and ask them to co-sponsor or introduce HR 6790. For more information on how to get involved, visit www.NephCure.org
