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.
St. Louis Community Meeting
Pain, Fatigue, Anxiety – What You Can Do To Manage These Symptoms
While Living with PKD
Join us for our next Community meeting via video conference.
PKD patients often struggle with pain, fatigue and anxiety. Yasar Caliskan, MD, Erick Messias, MD, MPH, PhD and Ruth Shach, MPH, PhD from the PKD Foundation Center of Excellence, Saint Louis University, will lead a discussion on managing these symptoms. Join us to learn things that you can do to that will ease these symptoms in your daily life.
Share your PKD journey and hear from others within the community who understand what you are experiencing.
Event Details:
Monday, November 4, 2024
7 pm – 8:30 pm
Video conference link will be emailed upon registration.
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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.
Jean Sommer
PKD Connect Ambassador & walk ambassador
I have been the volunteer St. Louis Walk Ambassador since 2014 and the St. Louis Connect Ambassador since 2015. I decided to volunteer because, as an ADPKD and PLD patient, I wanted to learn as much as I could about my conditions and I wanted to make a difference in the lives of others.
Learning about PKD and PLD from speakers at local events and national PKD Foundation events, like the PKDCON, also helped me face my fear of these diseases. I was very much at peace when I had my liver transplant in August 2016 and living donor kidney transplant in November 2023.
As a PKD Connect Ambassador, I hope that I can help ease the fears of others by providing support and education meetings for my Community members. As the Walk Ambassador, I rally and gather together the St. Louis PKD Community for our annual Walk for PKD. I was also inspired to volunteer because PKD runs in my family—both my sister and my brother are affected by this disease. In addition, I have two children who each have a 50 percent chance of having PKD. I enjoy organizing the Walk for PKD because I want there to be treatments or a cure so that my children, and others, will not have to go through what I have gone through.
Page last updated July 2023
