Welcome to the

St. Louis

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.

Get Involved

We are in search of a key volunteer to lead efforts for the St. Louis Walk for PKD. This volunteer leader role is currently vacant and the continued success of the St. Louis Walk for PKD relies on leadership in this role in your area. If you are interested in this opportunity to volunteer and further our shared vision to #endPKD, please reach out.

 

If you have questions, please email us at walkforpkd@pkdcure.org.

St. Louis Community Meeting

What to expect on dialysis

Dr. Seth Goldberg from Barnes-Jewish Hospital will join us to share information about what to expect on dialysis.

We will also have time to make connections, share your PKD journey and hear from others within the PKD community who understand what you are experiencing.

Event Details:

Monday, June 13, 2022
7 – 9 pm

Video conference link will be emailed upon registration.

Meet our Speaker

Dr. Seth Goldberg, MD is a nephrologist in Saint Louis, MO specializing in Adult Nephrology. He graduated from University of Florida College of Medicine in 2003 and has 19 years of experience. Dr. Seth Goldberg, MD is affiliated with Washington University Physicians, Barnes-Jewish West County Hospital and Barnes-Jewish Hospital.

 

Clinical Interests
Polycystic kidney disease (PKD), transplantation donor evaluation, calcium-phosphorus metabolism and bone-mineral disease, kidney stones, high blood pressure, dialysis

Research Interests
Polycystic kidney disease (PKD), calcium-phosphorus metabolism and bone-mineral disease, kidney stones

The 2022 Walk for PKD launches in May. Watch the Walk for PKD webpage for more updates. We look forward to you joining us for an exciting year of fundraising to support PKD research. A cure is our finish line!

The PKD Connect Conference (PKDCON) is an annual event that brings together every part of the PKD community—from patients and caregivers to researchers and physicians—to provide education, research updates, resources, and networking opportunities.

Virtual and free to attend this year, PKDCON 2022 will provide a rich educational experience, meaningful interactions with other participants, and engaging Q&A sessions with faculty.

Join us for our second virtual conference June 24 – 25.

Last year, 1,600 attendees from over 40 countries joined us for our two-day virtual event. Register today to learn alongside PKD community members just like you. Register now!

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.

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.

Jean Sommer

PKD Connect Ambassador

I have been the volunteering for the St. Louis Community since 2014. 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.

As a PKD Connect Ambassador, I hope that I can help ease the fears of others by providing education meetings for my Community members and rallying them together 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 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 March 2022

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