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.
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.
|
|
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.
Stephanie Seaborg
PKD Connect Ambassador
After graduating college I worked in finance before having children. I was a stay at home mom raising a son and daughter and did volunteer work in the school and community. Since my husband retired we have been spending more than half of the year in Florida where I have been actively involved in a number of committees in the community where we live.
This past January I learned that my 10 year old grandson has PKD. He was asymptomatic but he had a bump on his back which turned out to be a hematoma but the ultrasound showed that he has PKD. Needless to say I was quite shocked as I had never heard of PKD. I told myself I would do whatever I could to help the cause. I have a good friend who has been a real inspiration to me. When he lost his six year old granddaughter to glioblastoma he worked tirelessly to centralize the database between patients and doctors and his work has made an enormous difference in the treatment of brain cancer. We all know that life isn’t without its challenges but I’d like to think that when they come our way we try to find something positive to help get us through.
Justin Greene
PKD Connect Ambassador
After graduating from Johns Hopkins University in 2021, I moved to San Francisco to work at a drug discovery startup called Octant, where I had the opportunity to conduct research on various rare disease drug programs. I experienced how important patient advocacy is in informing therapeutic research and was inspired by the people and communities with whom I interacted.
Last year, I learned that my own family carries a dominant mutation for Polycystic Kidney Disease. Because PKD is one of the most common rare diseases, the patient population is markedly diverse. My goal as a Connect Ambassador is to help as many voices be heard as we make advancements in PKD research and care, and to ensure that no patients are left behind. I moved back home to Boca Raton, Florida, this past Spring and am excited to learn from and contribute to the South Florida PKD community.
I am also an aspiring physician-scientist. Throughout my career, I hope to stay involved with the PKD Foundation and continue contributing as I gain more experience in clinical research and care.
Sofia Celis
Walk for PKD Ambassador
I am your new Walk for PKD Ambassador. Ask me about the South Florida Walk!
Page last updated July 2024
