Looking Back on 2020

Published on December 22, 2020 | It’s safe to say 2020 was a whirlwind of a year. From learning to social distance to pivoting to virtual events, the COVID-19 pandemic has meant adapting our personal and professional lives. But despite all the changes, it never slowed our work at the PKD Foundation. Here’s a look back at 2020.

2020 Highlights


  • In 2020, the Foundation funded 19 researchers through $2.87 million in grants.
  • We worked hard to include PKD language in DOD and NIH federal research funding programs. This year, PKD researchers were recommended for $14 million in grants, the highest amount ever.
  • We also increased our commitment to the Critical Path Institute (C-PATH) by expanding our leadership role with the Polycystic Kidney Disease Outcomes Consortium (PKDOC). PKDOC is a collaboration with the FDA and researchers who work to establish drug development tools that will help bring more PKD treatments to market faster. This consortium was responsible for establishing the total kidney volume (TKV) biomarker, which led the way to the first FDA-approved treatment.
  • The ADPKD Registry, the first national patient registry for individuals with ADPKD, now includes over 1,800 registrants. In the new year, we’ll start sharing more data with participants about what we’re learning. Keep an eye out as we add more modules and clinical trial information throughout 2021.

Advocacy & Awareness

  • This year, PKD research language was included for 2021 federal funding. The Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act of 2019 passed in the House and the Senate. And today, December 21, it’s on its way to the President’s desk for signature! The PKD Foundation partnered with the greater kidney community to achieve this monumental victory for patients and donors.
  • We established the Advocacy Champion Network (ACN)—an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. Over the next several years, the Foundation will continue investing in and expanding this program.
  • Over 230 supporters on Giving Tuesday helped raise over $48,000! Your generosity was truly overwhelming.
  • Raising over $1 million for PKD research, 2,500 participants and 400 teams joined us during the first ever virtual Walk for PKD.

“While this was a challenging year, the PKD community never wavered in spreading awareness of PKD. From embracing the virtual Walk for PKD to supporting our Giving Tuesday campaign, you proved nothing can stop our vision to #endPKD.” – Andy Betts, PKD Foundation President and CEO


Looking to 2021

In 2021, we’ll co-host the PKD Summit in March for our research community; host PKDCON for patients and their families; continue developing our physician education program; renew our commitment to fund research labs doing the best PKD research in the world, as vetted by peer review.

Together, we’ve navigated a crazy, challenging year, and we’re looking forward to brighter days in 2021. As always, we thank you for your unwavering support.

The PKD Foundation wishes you a happy and healthy holiday season. We’ll see you in the new year!

1 Comment

  1. Carol Boeing

    Bravo to our friends at PKD FOUNDATION who work so hard to improve the lives of all affected by Polycystic Kidney Disease! You are appreciated for your dedication and trustworthy commitment to research and support for individuals and families. Where would we be in the battle for a cure and treatment without you? Thank you PKD FOUNDATION staff and medical researchers and advisors!


Submit a Comment

Your email address will not be published. Required fields are marked *






Enter your email address to subscribe to this blog and receive notifications of new posts by email