Welcome to the

Long Island

Chapter

About Us

With the help of our Chapters 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.

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 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.

Gillian Kolodny

Chapter & Walk Coordinator

My family and PKD have a long history. Starting with my grandfather and possibly his father, it has stolen family members way before their time. It is also quite prevalent. The last two generations have seen the disease pass down to 100% of the children in the family. In 2003, I began volunteering with the PKD Foundation as we began the Long Island Chapter. It’s been an incredible journey so far! I feel quite blessed to have met so many wonderful people through the Foundation. We affectionately call ourselves “The Little Chapter That Could”. Since joining together, we have had a PKD awareness news program, were able to get the local and state legislature to reserve a day as PKD Awareness Day, and continue to support countless families as they begin to understand and move through their own journeys with PKD. We have members in all stages of PKD which makes it helpful when others need support. Banding together to raise funds and awareness to stand up to PKD is our focus. Being here to support one another is paramount! We hope to meet you soon. Please reach out if you’re living on Long Island, and if you’re interested in speaking with others living with PKD.