Living With PKD
Fighting for a Cure
When it comes to polycystic kidney disease (PKD) in the United States, no organization is more dedicated to understanding and combating the disease than the PKD Foundation (PKDF). Jared J. Grantham, M.D., and Joseph Bruening founded the PKDF in 1982 with a shared vision—to find treatments and a cure for PKD.
Since its inception, the Foundation has invested more than $50 million in basic and clinical research, nephrology fellowships, and scientific meetings. Their commitment to funding life-changing research has earned them the title of being the largest private investor of PKD research.
More Than a Place to Call Home
Beyond housing its headquarters, the PKD Foundation has deep roots in the Kansas City community. Through his work at the University of Kansas Hospital, Dr. Grantham brought a much-needed focus to the relatively unexplored field of PKD research. He led the hospital’s Division of Nephrology and founded the Kidney Institute at the University of Kansas Hospital. These world-class programs continue bringing valuable training to new researchers today.
Comprehensive PKD Support
While the PKD Foundation is primarily focused on funding PKD research and treatments, its mission includes building a community for all impacted by PKD. To accomplish this, PKDF provides patient and physician education; advocates for legislation that affects PKD patients; raises national awareness of the disease; and supports the PKD community with various local and virtual programs.
From creating webcasts to training peer mentors, the Foundation provides patients and caregivers the tools and resources needed to navigate their PKD journey. And, through the Foundation’s website and social media channels, patients and caregivers can easily connect with volunteers and local events.
After a diagnosis, families often have a lot of questions. How will PKD affect me on a daily basis? Should I change my diet? How can I best support my loved one with PKD? With the help of a Scientific Advisory Committee, the Foundation maintains up-to-date patient information on its website and PKD Blog.
“Not only is the Foundation funding instrumental work toward a cure, we are ensuring no one is alone on their journey with PKD. We take our mission to give hope very seriously,” said Chad Iseman, Chief Advancement Officer.
Empowering Patients
From its founders’ personal connections to PKD to working directly with families affected by PKD, the PKDF has always put patient needs first. That’s one reason the organization created the ADPKD Registry, the first nationwide patient registry for individuals with ADPKD, to hear directly from patients.
Launched last September, the ADPKD Registry is a secure network that uses an online portal to collect patient-provided data about living with ADPKD. The Registry serves a dual purpose; researchers are able to use patient information to develop outcomes better reflecting patient perspectives, and patients are exposed to a variety of research studies in which they are qualified to participate.
Furthering the Search for a Cure
Since 2000, the Walk for PKD has been the largest annual gathering of PKD patients and supporters. Walk events stretch from coast to coast, and 100% of the proceeds go directly to critical PKD research. In its 20-year history, the Walk for PKD has raised an incredible $33 million.
“The Walk for PKD is a fun, family friendly event that builds a sense of community, while providing hope through our shared goal— a cure for PKD is our finish line,” said Sue Full, Senior Director of Community Fundraising.
And attending this family-friendly event is easy. Participants simply register, appoint a team captain to spearhead fundraising, and show up the day of the event. Through their own fundraising, participants are empowered to take the advancement of PKD research into their own hands. “Being a part of a movement that is funding research to better people’s lives is a powerful motivator,” shared Full. Event registrants have access to a personal fundraising page where they can share their story and encourage family and friends to donate.
The Walk for PKD not only gives patients the ability to directly impact the future of PKD research but connects patients and families to those navigating a similar journey. Together they can share experiences, compare information, and receive genuine validation and understanding from their community.
Adapting During COVID-19
With the ongoing COVID-19 pandemic, the PKDF is bringing its signature event to a virtual platform to provide the PKD community a safer environment to Walk for PKD. While there won’t be an in-person event, the spirit of the nationwide Walks will remain the same.
“I know the experiences that we’ve all shared together will infuse the virtual Walk for PKD in 2020. Our participants can take their passion into the virtual environment and continue inspiring fundraising and teamwork as we all work for one common goal, to end PKD,” shared Full.
Participants are still encouraged to fundraise as teams to increase their impact on PKD research. The PKDF will work alongside volunteers to engage the Walk community and foster an understanding, supportive environment where patients and families can come together. Though things may look a little different this year, there’s no stopping the fight to #endPKD.
To learn more about the Walk for PKD and how you can get involved, visit walkforpkd.org.
