Welcome to the

Los Angeles

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.

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.

Dwight Odland

pkd connect ambassador

I got involved as Chapter Coordinator in 2006 because I saw a clear need for improved patient education and support. I enjoy meeting fellow PKD patients and family members and doing what I can to help them in this journey. I also enjoy helping with the annual PKD Walk so that we can raise money for research to bring an end to this disease. In addition, I was a member of the PKD Foundation Board of Trustees from 2013-2019 and have also represented the PKD patient perspective at two international conferences. I’ve authored, and co-authored PKD-related papers and served as a “stakeholder” in research grant review sessions for the PKD Foundation and the Department of Defense. My personal mission is to improve “standards of care” for all PKD patients.

One of my favorite things about being a part of the PKD Foundation is meeting other volunteers and brainstorming / collaborating on how we can be more effective making a positive difference in the lives of our fellow PKD patients.

Mary Suydam

Education Coordinator

PKD has always been part of my life. My grandmother, mother, and uncle all passed away younger than they should have from complications of ADPKD, and in my 20s I learned that I had it too. Two of my children also have it. I was fortunate to receive a transplant in 2011 that has given me a second chance at life. Now that I have retired and moved back to the state I love, California, I want to work with the PKD Foundation as a volunteer to raise awareness about this disease, promote donor awareness, and be part of the solution for finally ending its terrible toll.

Andy Tang

Walk for PKD Ambassador

I started my volunteering in 2014 when my mother-in-law began experiencing renal failure due to PKD. Since then, two more family members were diagnosed to have PKD. I volunteer for those that cannot. I want to help find a cure so that others may not suffer the same fate. The Walk for PKD is an annual event to raise funding for PKD research. The annual Walk for PKD is a great way to get involved. We are always looking for volunteers. Message me if you are interested. 

 

Page last updated March 2022

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