The Polycystic Kidney Disease (PKD) Foundation

Advocating for research funding to help find a cure for PKD

The Challenge

Polycystic kidney disease (PKD) is the fourth leading cause of kidney failure and one of the most common, life-threatening genetic diseases in the United States. As the largest private funder of PKD research in the United States, the PKD Foundation supports education, research, advocacy and awareness of PKD. Determined to increase treatment options and find a cure for the deadly disease, the PKD Foundation sought CURA’s support in bolstering funding for PKD research through grassroots advocacy and congressional engagement.

The Solution

CURA helped the PKD Foundation secure over $50 million in appropriations funding for PKD research and establish a robust grassroots program and congressional engagement strategy to advance their policy objectives.

Since the beginning of our partnership with the PKD Foundation, CURA has submitted more than 130 appropriations requests to congressional offices, which helped secure PKD as a designated research topic under the Senate Department of Defense’s Peer Reviewed Medical Research Program (PRMRP) for four consecutive years starting in 2020. This has led to more than $50 million in designated funding for PKD research.

CURA also worked with the PKD Foundation to establish the organization’s legislative agenda, recruit and mobilize PKD advocates to participate in grassroots congressional action alert campaigns and leverage partnerships with kidney care stakeholder groups to advance shared policy priorities.

To help the PKD Foundation achieve these goals, CURA supported the Foundation in:

Defining their congressional engagement strategy, identifying legislative priorities, and monitoring the legislative landscape
Leading the Peer Reviewed Medical Research Program (PRMRP) appropriations submission process on their behalf
Developing legislative briefs, one-pagers and issue briefs
Organizing and leading virtual and in-person Advocacy Days
Activating the research and medical community through sign-on and support letters
Building and mobilizing a grassroots network of advocates from across the country through an online activation system and email marketing
Developing an Advocacy Champions program of committed advocates to participate in year-round advocacy training and congressional engagement
Developing advocacy-related blog posts, newsletter updates, and social content

The Results

PKD researchers signed onto letters of support for DoD funding for PKD

Advocacy Champions successfully recruited and trained to engage congress proactively and independently

congressional meetings involving over 300 advocates as a result of three successful virtual advocacy days

member and staff-level meetings secured during PKD’s 2024 Executive Team Leadership Fly-In

1,300

advocates recruited and mobilized to participate in congressional action alert campaigns

170,000

people reached through CURA’s pro-bono media relations campaign for Ride for PKD

$50 million+

in dedicated funding for PKD research through the PRMRP

Testimonials

With CURA Strategies we’ve found a truly excellent partner in our government affairs and advocacy efforts. They provide us a comprehensive one-stop shop for strategic advice, grassroots organizing, communications and legislative activities in the service of our community and have truly integrated as part of our team.

Chris Rusconi

Former Chief Research Officer, PKD Foundation