39 Years of PKD Progress

Published on August 19, 2021 | Nearly 40 years ago on August 20, 1982, Jared J. Grantham, M.D., and Joseph H. Bruening founded the PKD Foundation. Their goal? To find treatments and a cure for polycystic kidney disease (PKD). Education, research, advocacy, and community are all essential pillars in our vision to #endPKD. As we celebrate the PKD Foundation’s anniversary this week, let’s look at the past 39 years of PKD progress we’ve accomplished.

 

39 Years of PKD Progress in Research

When it comes to ending PKD, conducting research is essential. Over the years, over $50 million worth of PKD research has been funded by the Foundation. But that’s just the tip of how we make an impact on PKD research.

We’re a committed member of the Critical Path Institute (C-PATH) and leader within the Polycystic Kidney Disease Outcomes Consortium (PKDOC). PKDOC is a collaboration with the FDA and researchers working to establish drug development tools that will bring 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, tolvaptan. Today, we have more drugs in the pipeline than ever before.

We created the ADPKD Registry, the first national patient registry for individuals with ADPKD. Growing tremendously in just two years, it now includes nearly 2,000 registrants. The Registry collects information in a standardized and anonymous format, telling us about the patient journey, unmet medical needs, and patient preferences while revealing more about the disease burden on the lives of ADPKD patients and their families.

How you can get involved:

  • Sign up to receive Accelerating Clinical Trial (ACT) Alerts! You’ll receive notifications about ongoing clinical trials and can help advance PKD treatments.
  • Join the ADPKD Registry to share your experiences directly with PKD researchers. Your insight helps shape their understanding of the disease.

39 Years of PKD Progress in Education

While researchers work to #endPKD, educating the PKD community on how to manage the disease while maintaining a high quality of life is essential. In 1989, we hosted our first big educational event—the inaugural PKD National Convention. Uniting patients, researchers, and health care professionals, this ongoing event creates the opportunity for patients and caregivers to learn directly from PKD experts. With the transition to a virtual event for 2021, we were able to provide PKD education and connection opportunities to a global audience for free. Sessions from the event will be up on the website soon–stay tuned!

This year, the Foundation announced the formation of the Education Advisory Panel (EAP), a new resource to guide the development of the Foundation’s education. In creating the EAP, our goal is to improve PKD patient care with education at patient and provider levels. Through education, patients will be empowered to advocate with their health care provider and make daily decisions to promote their health. With health care provider education, we’ll help them understand how patients experience the disease and teach them best practices in PKD treatment.

How you can get involved:

  • Join us for the 2022 PKD Connect Conference. Details for the event will be announced later in the year.
  • If you have expertise in PKD, apply to join the EAP. As you start your PKD journey, these resources can help you at every step along the way.

39 Years of PKD Progress in Advocacy

To create better patient outcomes, we need more than just new PKD treatments. We need legislative change and protections for the PKD community. Back in 1990, we lobbied Congress to include the first Appropriations Committee report language about PKD research support by the National Institutes of Health (NIH), encouraging the NIH to expand research in the pathogenesis and treatment of PKD.

In 2008, the first PKD Foundation United on the Hill event was hosted. It pushed for more federal funding for PKD research and to pass the Genetic Information Nondiscrimination Act (GINA). After a 13-year fight, GINA was passed by Congress and signed into law.

To further PKD-inclusive legislation, we created the PKD Foundation Advocacy Champions Network (ACN). The ACN is an exclusive community of patients, family members, and clinicians dedicated to improving the lives of people living with PKD. At its core, the ACN teaches its members how to advocate for legislative change with their state representatives.

And in 2021, we helped 18 states pass protections for living organ donors. Next, we tackle passing these protections at the federal level.

How you can get involved:

  • Sign up for Advocacy Alerts to get all the information you need to stay current on the happenings in D.C., and a simple way to contact your legislators on important issues.
  • Share your story. Tell your friends, family, and elected officials how they can help fight for PKD-related funding and regulation.

 

39 Years of PKD Progress in Community

Fostering a sense of community is a top priority for the Foundation. And what brings people together more than the Walk for PKD? At the first Walk for PKD (2000), 900 PKD patients, families, and friends raised $214,000. By 2021, the Walk for PKD had raised over $33 million for research.

Outside of the Walk, the Foundation supports local PKD events around the country. From arranging virtual support meetings to promoting local fundraising events, the PKD Foundation ensures everyone in our community has a way to connect and find support, including through PKD Connect, a hub of information, resources, and connections.

How you can get involved:

  • Register for the 2021 Walk for PKD! Join us October 8–17 for the virtual Walk to spread awareness and raise critical dollars for PKD research.
  • We have volunteer Chapters all across the U.S. Find a Chapter near you!

Looking to the Future

From expanding the ADPKD Registry, creating the ACN, and hosting international virtual events, big things are on the horizon for the PKD community. As we look toward our 40th anniversary, the PKD Foundation remains driven by our vision to #endPKD and our mission to give hope.

 


Your support makes progress happen. Help us kick-start our 39th year of work in PKD with a gift to the Foundation. There’s no limit to watch we can achieve when we work together.

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