Walk for PKD - Your Way
Walk for PKD - Your Way! is an opportunity to join the nationwide Walk for PKD community in a way that caters to your schedule and interests while keeping things simple. Walk for PKD - Your Way! offers you the freedom to choose – how, when, and where you Walk for PKD. Participate as an individual or a team of loved ones, select a date and decide how you are going to Walk for PKD Your Way. How you raise awareness and funds for PKD research is up to you!
If you have questions, or would like to help with next year's walk, please reach out to us at walkforpkd@pkdcure.org.
Get Involved
Are you interested in helping us grow the Tidewater Community?
We are looking for volunteers to help us offer more opportunities in your local area. If you are interested in this opportunity to volunteer and further our shared vision to #endPKD, please complete our volunteer form and let us know how you would like to get involved.
If you have questions, please email us at volunteers@pkdcure.org.
If you have questions, or would like to help with next year's walk, please reach out to us at walkforpkd@pkdcure.org.
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.
Peer Mentorship Program
If you’re looking for a shoulder to lean on or want to help others from the safety of your home, our Peer Mentor Program is a great resource:
- Interested in connecting with a mentor? Please take a moment to fill out our mentee survey and our team will follow up with you via email or by phone.
- Interested in becoming a peer mentor? Please complete our mentor application and a member of our staff will follow up with you by email or by phone.
Walk for PKD
Registration for this years Walk for PKD is now open! Find your walk at walkforpkd.org
Centers of Excellence
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.
ADPKD Registry
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.
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!
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