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Published on December 21, 2021 | Recently, we hosted our inaugural Advocacy Champions Network (ACN) Awards Ceremony. Together, we honored and celebrated PKD advocates who’ve dedicated significant time to improving the lives of people living with PKD. Furthermore, their leadership and commitment helped secure and increase federal PKD research funding, garner new cosponsors on legislation like the Living Donor Protection Act, forge new relationships with state and federal lawmakers, and raise awareness for PKD.

ACN Champions Awards

Founded in 2020, the ACN is a group of PKD community members from across the U.S. engaged in formal advocacy efforts with federal policymakers. At the awards ceremony, we recognized two ACN Champions for their outstanding leadership and performance over the past year. Patti Ruffin, a PKD patient advocate based in San Antonio, received the 2021 ACN Champion of the Year Award. Because of her PKD awareness article featured the San Antonio Express-News and the relationship she built with her Congressman Tony Gonzales, Patti inspired other champions in the ACN and has shown herself to be an asset working on the frontline of PKDF advocacy efforts.

Additionally, Sea Krob of California was honored with the 2021 ACN Needle Mover Award for their persistent efforts to advance kidney care legislation. They helped slowly “move the needle” by engaging state and federal lawmakers to forward PKDF’s legislative priorities.

Congressional ACN Awards

During the ceremony, PKDF also recognized Senator Roy Blunt (R-MO) and Representative Debbie Wasserman-Schultz (D-FL-02). They received the 2021 PKDF Congressional Champion Award. This award honors members of Congress serving PKD patients and families through efforts to help promote public awareness for PKD and advance critical legislation in support of progress toward a cure.

Specifically, both Senator Blunt and Congresswoman Debbie-Wasserman Schultz worked with the Foundation to champion continued funding for critical PKD research in the Senate and House Appropriations Committees. The PKDF is proud to work alongside committed leaders in Congress to help advance the health, education, and quality of life of those living with PKD.

2022 Advocacy Efforts

While the year wraps up, the PKDF will continue working with the ACN and champions in Congress to advance its 2022 policy agenda. During 2022, our legislative priorities include:

• Expanding federal investment in PKD research, seeking the establishment of the Polycystic Kidney Disease Research Program (PKDRP) under the Congressionally Directed Medical Research Program (CDMRP)
• Supporting and advancing policies that address racial disparities in PKD care and promote health equity.
• Encouraging and directing research initiatives at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) through the congressional appropriations report language

So, ready to stay updated on ACN activities and learn more about how you can advocate for PKD patients and families? Sign up to receive PKD Advocacy Alerts and the latest advocacy news.