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.
ARPKD RESEARCH FUND
WALK FOR PKD
The Walk for PKD ARPKD Research Fund
invites you to join us anywhere, anytime and
fundraise in whatever way suits you best!
When you participate in the Walk for PKD, you increase awareness, support families impacted by the disease, and raise critical funds to accelerate a cure for PKD.
To get started, register and start fundraising today!
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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.
Michele Karl
PKD Connect Ambassador | PKD Parent Community
Michele Karl is a mom to three boys, her three peas. Max who is 21, Nate who is 18, and Gabe who is 15. Max and Gabe were diagnosed with ARPKD in 2006 after Gabe was born with echogenic kidneys. Michele has been involved with the PKD Foundation ever since. Luckily the boys appear to be on the milder side for ARPKD and currently are both hovering around the 70% range for kidney function. They both also have high blood pressure and Gabe has some mild liver issues. Michele is always available to talk to parents with children with PKD. Besides advocating for her boys Michele is a special education preschool teacher, loves gardening and reading, and likes to make jewelry with vintage objects such as typewriter keys.
Dani Buckner
PKD Connect Ambassador | PKD Parent Community
My name is Dani Buckner. I live in Northeastern Ohio. During the day, I work in higher education. I am also a full time student, recently going back to College. My greatest job is being a wife and mother to 5 amazing girls. Our oldest, my bonus daughter, is 20 years old. The other four stagger in ages between almost 10 and almost 16. They are all the perfect mix of sensitivity, boldness, and beauty. It’s an honor every day to be their mom.
Two of my daughters have ADPKD. My husband and I do not have PKD. That question eventually comes up. Our journey with PKD started when the girls were young, four and five years old. They have an aggressive genetic mutation. While most people with the dominant form to not become symptomatic until later in life, we are over achievers and started early. We can follow our family tree, showing that each generation has needed transplant earlier and earlier.
PKD isn’t a one size fits most, disease. My girls diseases, each presented with completely different symptoms and continue to display different symptoms of the disease to this day. Our story has many ups and downs and twists and turns. From medication changes, to chronic pain, and eventually experimental surgeries. We have learned how to find our ‘new normal’ over and over.
Years ago, my husband and I went to our first PKD conference. I had zero faith in the pediatric Nephrologist who diagnosed our girls. We went for a second opinion and we were met with the same doom and gloom. After a google search, I found the PKD foundation. Knowledge is power. Before the conference we had no clue how to advocate for our girls. The conference led to finding our ‘forever Doctor’. I have had the privilege of becoming close with many people in the foundation.
Over the years, I have had the honor of speaking at conferences and talking to some of the best minds. My family started to build a new family, our PKD family. I will forever be grateful for the friends we have made. On our worst days, I always had people who understood exactly what I was feeling. I was able to connect my girls to other kids who face the same challenges. When I was asked to work with the PKD Parents chapter, I couldn’t say no. I look forward to getting to know new parents throughout the country, sharing our story and hearing yours
Page last updated March 2022
