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PKD Foundation

@pkdfoundation

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We give hope. We fund research, advocate for patients, and build a community for all impacted by Polycystic Kidney Disease (PKD).

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Risa Simon, PKD patient and PKD Foundation volunteer, shares a heartfelt message of gratitude to her husband, for supporting her throughout her PKD journey.

November is National Family Caregivers Month. Caregivers give so much of their time, energy often without receiving the recognition they deserve. Throughout the month, we’ll be sharing a few videos from the PKD community to celebrate the caregivers who are there through it all.

We hope these videos inspire you to take a moment to thank your caregiver, too. ❤️ by @pkdfoundation

Caregivers play an important role in the PKD community, so we want to let them know how much they’re appreciated.

If there’s a caregiver in your life, here are a few ideas to help you say “thank you.” by @pkdfoundation

Thank you for walking with us in 2026! Your fundraising fuels critical research and improves the lives of those affected by PKD.

And there's still time to work towards your personal fundraising goal! Donations are accepted through the end of the year, so you can continue making an impact. by @pkdfoundation

Jessica Seniuk’s experience in the Advocacy Champions Network took her all the way to Capitol Hill. 🏛️

Join her and other ACN members in strengthening the voice of the PKD community and advocating for progress at the federal level. Apply today at the link in our bio. by @pkdfoundation

Looking for a fun, fall breakfast that supports kidney health? These pumpkin-date overnight oats are a tasty place to start, providing fiber, plant-based protein, and calcium with no added sugar.

Shih Min (Melody) Chang, M.S., RD, LD, CSR, a kidney health dietitian within the PKD Foundation Center of Excellence network, explains why this recipe can be a nutritious option for people living with kidney disease in the full article.

Find the full recipe at the link in our bio. by @pkdfoundation

That’s a wrap on @asnkidney #KidneyWk 2026!

Highlights included seeing PKD-focused research presented throughout the conference, celebrating PKD Foundation grant awardees Eunji Chung and Ryan Williams as they presented their work, and sharing information about the new BRIDGe Grant program, developed in collaboration with @cpathinstitute.

The continued focus on new therapeutic approaches and efforts to accelerate progress for people living with PKD is encouraging.👏

We look forward to building on what we learned and the connections we’ve made at Kidney Week to advance PKD research, care, and education. It’s an exciting time in PKD research! by @pkdfoundation

Last month, PKD Foundation Advocacy Champion Sean Piccirilli spoke at a congressional briefing on the Congressionally Directed Medical Research Programs (CDMRP), sharing his family’s experience with ARPKD and why the CDMRP’s continued investment in PKD research matters.

Sean is a recently retired Air Force intelligence officer with 24 years of service, a father of a child living with ARPKD, and a longtime member of our Advocacy Champions Network.

The briefing was led by the Defense Health Research Consortium, a coalition of patient and community groups advocating for the CDMRP. The PKD Foundation is proud to be a member.

Thank you, Sean, for sharing your family’s story and being a powerful voice for the PKD community! by @pkdfoundation

Turn your special celebration into impact through Fundraise Your Way! 🎂

Whether it’s celebrating a birthday, wedding, anniversary, graduation, or PKD milestone, you can help accelerate PKD research and support the PKD community.

Start your fundraiser today at the link in our bio. by @pkdfoundation

Earlier this year, Marilyn Carson joined us in Washington, D.C., to advocate for policies that directly benefit the PKD community. Through the Advocacy Champions Network, you can join her and help advance critical policies that will shape the future of PKD care. 🇺🇸

Apply today at the link in our bio! by @pkdfoundation

Even with the best medical care, about 1 in 5 babies diagnosed with severe autosomal recessive polycystic kidney disease (ARPKD) before birth do not survive past infancy. In many cases, this is due to serious breathing problems caused by underdeveloped lungs and enlarged kidneys putting pressure on the chest.

Today, on National Pregnancy and Infant Loss Remembrance Day, we recognize the babies and families affected by ARPKD, a rare genetic disorder that occurs in approximately 1 in 20,000 children.

If you've experienced the unimaginable loss of a baby with ARPKD, please know that you don’t have to navigate this experience alone. Appendix B of the PKD Foundation’s ARPKD Patient Handbook includes resources that may be helpful to families following a diagnosis or loss. Request your copy at the link in our bio. by @pkdfoundation

All PKDCON 2026 session recordings are now available on demand!

▶️ Link in bio. by @pkdfoundation

We love walking alongside our incredible PKD community every year 💙 by @pkdfoundation