Published on September 14, 2023 | Aside from funding research, one of the best ways to drive change in the PKD community is through advocacy. One way you can take part in PKD advocacy is by joining the Advocacy Champions Network (ACN). Applications are now open for the 2023-2024 ACN program year! Join other PKD advocates from across the United States to drive policy change in support of the PKD community.
What is the Advocacy Champions Network?
The ACN is an exclusive group of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. As PKDF Advocacy Champions, they work to build relationships with members of Congress and staff. Secondly, they lead advocacy efforts in their states to advance legislation supporting PKD research, treatments, and care.
In their role as a spokesperson for PKD, they take part in several activities at the state and national level.
- Organizing, leading, and/or participating in events and meetings with lawmakers and congressional staff
- Engaging local and national media outlets to raise awareness for the PKD community and the Foundation’s policy priorities
- Recruiting other advocates to raise their voice in support of PKDF’s policy priorities and participate in PKDF events
To prepare them for success, Champions participate in required PKDF policy and media training. Some of these subjects include:
- How to have a successful meeting with congressional lawmakers and staff
- How to share their PKD story
- Pitching op-eds or letters-to-the-editor (LTEs) to local media outlets
2022-2023 ACN Class Accomplishments
Through PKDF’s Virtual Advocacy Day, the 2022-2023 ACN class led their state delegations to meet with elected officials. Because of their hard work, 92 advocates participated in 110 congressional meetings with lawmakers and staff.
They advocated for:
- The Living Donor Protection Act (LDPA), which provides Federal protections for living organ donors
- 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)
- Anticipated legislation that elevates and addresses the consequences of racial disparities in kidney disease. This includes disparities in diagnosis, treatment, and access to transplantation, particularly for PKD
Following the Virtual Advocacy Day, more than 20 members of Congress cosponsored the LDPA. This is all thanks to the work of ACN leaders and their state delegations. In addition, PKD was included as a topic area in the DoD’s Peer Review Medical Research Program.
How You Can Become a PKD Advocate
In order to be a volunteer, you must be able to meet two important needs. First, you need to be able to commit to approximately 8-10 hours per month. Secondly, you’ll need to participate in monthly trainings and webinars.
Start making your impact on the PKD community today. Learn more and apply by October 15 to join this fall.
hi my name is mary diana levesque i was diagnosed with polycysstic kidney disease unfortunately 4 out of 6 siblings have the pkd my mom pass away in 1996 with pkd and in 2020 my sister berndine martinez pass away she had been in dialysis for 14 years and also got covid and did not make it, my sister beverly anderson is also in dialysis for 7 years. i started peritoneal dialysis for 3 years and still working i worked as a correctional officer and had to retire due to my illness i received a kidney transplant in march 23,2019 and doing very good i want to share my message or spock person please let me know how i can go about it thank u very much
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