Published on May 11, 2022 | On April 27, The PKD Foundation hosted Virtual Advocacy Day. This free event was open to every member of the PKD community—patient, caregiver, researcher, etc. Together, they met with federal lawmakers around the country to advocate for the PKD community’s needs.

Virtual Advocacy Day Recap

Reflecting on the event, Virtual Advocacy Day 2022 was a great success. Nearly 100 advocates participated in over 110 congressional meetings with their House and Senate offices to urge support for federal legislation that will advance PKD innovation, treatment, and care. Thank you to every advocate who participated!

PKD advocates from Virginia meeting with Bisher Martini and Carol Wang from Rep. Jennifer Wexton’s (D-VA) office.

Several advocates had a chance to meet with their Members of Congress and Senators directly. These members included:

• Mike Braun (R-IN)
• Mark Amodei (R-NV)
• Judy Chu (D-CA)
• Antonio Delgato (D-NY)
• Mike Gallagher (R-WI)
• Brett Guthrie (R-KY)
• Donald Payne (D-NJ)
• Lloyd Smucker (R-PA)

Advocacy Goals

In total, PKD advocates met with 54 Senate offices and 58 House offices across 29 states and the District of Columbia. They advocated for:

• Federal protections for living organ donors by passing the Living Donor Protection Act (R. 1255/S. 377)
• PKD research funding, including through the Department of Defense’s (DoD) Peer Review Medical Research Program (PRMRP), under the Congressionally Directed Medical Research Program (CDMRP)
• Forthcoming legislation that will elevate and address the consequences of racial disparities in kidney disease diagnosis, treatment, and access to transplantation, particularly for PKD

We’d like to extend our deepest thanks to all who generously dedicated their time to serving as voices for PKD patients, caregivers, and supporters who share one common goal: to #endPKD.

How to Get Involved After Virtual Advocacy Day

If you couldn’t participate in the Virtual Advocacy Day or you’d like to continue your advocacy efforts, here’s a few things you can do.

1. Let your Members of Congress know that you support the Living Donor Protection Act’s passage in the 117th Congress by using the Foundation’s convenient, pre-drafted message.
2. Sign up for the Foundation’s Advocacy Alerts. With increasing support for the Living Donor Protection Act, and a soon-to-be-introduced bill addressing racial disparities, we expect multiple opportunities for advocates to engage Congress this year.
3. Consider joining the Advocacy Champions Network, a dedicated group of advocates committed to engaging Congress and raising awareness for PKD. Registration will open later this year, but by indicating your interest now, we’ll be sure to follow up when you’re able to apply.
4. Lookout for our advocacy content at PKDCON next month, June 24-25.

We’re looking forward to a bright future for PKD advocacy, and hope you choose to be a part of it! If you have any questions about the PKD Foundation’s advocacy program, please contact Patrick Meade.

The PKD Foundation Virtual Advocacy Day 2022 was made possible by a grant from Otsuka America Pharmaceutical, Inc.