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 New Jersey 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.
Janet Gitterman
CO-PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
My journey with PKD began fifteen years ago, when I was diagnosed. My father was the first in his family to have this disease, and we recently found out that our son also has it. I am a strong believer in self-advocacy and learning as much as I can about PKD. I have attended National Conventions, state sponsored programs, and PKD walks, and have participated in several clinical trials, including the Tolvaptan study.
I have enjoyed being a PKD mentor and try to lend support and encouragement to people who are also experiencing this disease. I am excited to serve as the PKD Connect Ambassador in New Jersey.
On November 17, 2021, I received a preemptive transplant with my husband as my donor! Post-transplant I have become involved in the NJ Sharing Network, which promotes organ donation. Presently retired, I spent my career as a social worker and art therapist.
Natalie Perrone-Zidziunas
CO-PKD Connect Ambassador
Contact your local PKD Connect Ambassador to learn about local activities and connect with others in your community that understand what you are going through.
My name is Natalie Perrone. I live in Toms River, New Jersey. I was diagnosed with PKD and PLD, 14 years ago. First person to have it in my family. Received a liver and kidney transplant at the Hospital of the University of Pennsylvania, Philadelphia.
Why is volunteering at the PKDF important to you?
To bring awareness of PKD and connect with the community to help share knowledge about this horrible disease. Making a difference in the lives of others struggling with PKD/PLD, so they know they are not alone.
Stacey McClain
Walk for PKD Ambassador
Connect with your local Walk Ambassador to learn more about the annual Walk for PKD in your area!
I’m the Walk for PKD Ambassador for New Jersey because I want to know I’m doing everything I can to end PKD. I’m helping my friends, family and community learn more about PKD and have a little fun along the way at the biggest PKD event in the state each year.
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