Welcome to the
community
With the help of our communities in cities across the country and beyond, we provide a forum for patients who want to join in the fight to find treatments and cure for PKD.
Connect with us to find out how you can make a difference in the lives of thousands in the U.S. and millions worldwide.
2024 Tidewater
Walk for PKD
Saturday, September 7
Brock Environmental Center
Registration/site opens: 9:30 a.m.
Join us this fall and be a part of the largest gathering of the PKD community.
Sign up today and bring treatments to patients faster with 100% of each donation funding life-saving research at
walkforpkd.org/tidewater.
If you have questions, email us at tidewaterwalk@pkdcure.org.
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Registration for the 2024 Walk for PKD is now open! Find your walk at walkforpkd.org. |
The PKD Foundation is excited to the announce the newest cohort of Centers of Excellence, Partner Clinics, and Pediatric Clinics. If you are looking for the right healthcare providers to help you manage living with PKD, visit our Centers of Excellence page to learn more about the program and to find a Center of Excellence, Partner Clinic, or Pediatric Clinic.
There’s a new way ADPKD Registry participants can step up to provide hope today, and for future generations. The nation’s first dedicated ADPKD Registry is now also one of the first patient registries of any kind to integrate patient-provided health records. Share your health records through your provider’s online portal with a few simple steps on the ADPKD Registry.
Now, as always, the PKD Foundation is committed to our mission of giving hope, advocating for patients, and building a community for all impacted by PKD. We'll continue supporting our community by providing important resources and timely updates on social media. If you have questions or need help navigating this unprecedented health crisis, we are here for you. Email or call (844) PKD-HOPE.
Lynn Jones
PKD Connect Ambassador
I learned that my father had PKD about 19 years ago. Soon after, my two children and I underwent testing, and it was discovered that we all had PKD. I needed to understand more about the disease and what my options were. I visited several doctors, but they didn’t really offer me much information, I felt there wasn’t much that I could do, so I did not continue with visiting a specialist.
Once my dad was put on dialysis, I refocused on finding out more information. My PCP did not see any issues with my GFR since it was greater than 60, however, my GFR had been steadily declining. It was time for me to advocate for myself. I wanted to do everything in my power to slow down the progression. I searched the PKD Foundation website and found out that there was an approved medication that could slow the progress of the disease. I located a nephrologist in my area who specialized in PKD and scheduled an appointment. Finally, I felt that I had found a nephrologist who could answer my questions and was helping me do everything I could to slow the progression.
I am passionate about helping others and giving back. I want to support the PKD Foundation in assisting others in their journey with PKD and raising awareness.
David Damiani
PKD Connect Ambassador & Walk for PKD Ambassador
I’m volunteer for Tidewater Virginia because several years ago, I learned what PKD is when I discovered that it affected the lives of several acquaintances and business clients. I was shocked to learn that a life-threatening disease I’d never heard of before was so widespread, yet so little known. Fortunately, not long after that I learned about the great work of the PKD Foundation in both working to find a cure and in improving the quality of life and information for all those PKD affects. I was moved to get involved with the Foundation – if PKD has affected your life or the life of someone you know, I hope you will join me!
Page last updated July 2023
