PKD Foundation - Hudson Valley Community

04/27/2026

PKD NEWS

The Rogosin Institute is offering a webinar this coming Thursday, April 30, 7-8:30pm, on a new potential PKD Treatment, Vertex VX-407 that is set to begin a clinical trial at Rogosin this year.

Vertex VX-407 (“the Protein Fixer"):
How it works: Think of your kidney cells like a factory that needs a specific instruction manual to produce polycystin proteins, which keep the kidneys healthy. In many people with PKD, the manual is slightly "mis-written with a typo," causing the protein to fold into the wrong shape. Because it's misfolded, the body can't use the abnormal polycystin protein. VX-407 is a small molecule that works as a protein corrector. It finds those misfolded proteins and helps them fold into the correct shape so they can get back to work, helping your kidneys.

Administration: If you qualify, this medication is taken as an oral pill.

Who Qualifies: This is a highly specialized precision drug. Currently, it is only designed for patients with a very specific subset of PKD1 gene variants. We estimate that less than 10% of the PKD population will qualify for this particular study based on their genetic profile.

Webinar Details:
Topic: VX-407 and the Genetics of PKD
Date: Thursday, April 30th
Time: 7:00 PM - 8:30 PM
Link to Join: https://nyph.zoom.us/j/98243197004 (No registration required—just click to join!)

Zoom is the leader in modern enterprise cloud communications.

04/21/2026

SAVE THE DATE!! Our 2026 walk kickoff fundraiser will be Thursday, June 25, at Captain Lawrence Brewing Company in Elmsford from 6pm-10pm!!

And we are so lucky, the amazing Bittersweet Descent will be playing for us from 7pm-9pm!

More information to follow!

Hope to see you all there!!

03/12/2026

It’s World Kidney Day!! Spread the word, spread the conversation, talk about PKD. No one should feel alone in their kidney battle!

This National Kidney Month, breakthroughs are within reach—you can make them a reality. Donate today and your gift will be doubled: https://go.pkdcure.org/KM26S6

03/04/2026

Did you know it’s National Kidney Month? Spread the word!

01/29/2026

Fascinating development!! One to watch for sure!

Mayo Clinic researchers have developed a promising gene-editing therapy that directly corrects a genetic mutation responsible for autosomal dominant polycystic kidney disease (ADPKD), the most common inherited kidney disorder.

A single treatment of the gene therapy slowed kidney cyst growth, improved heart and liver health, and extended survival in preclinical models of ADPKD.

Learn more: https://mayocl.in/4k7fpvX

12/18/2025

It’s not too late to keep fundraising for the 2025 walk!! Keep those holidays donations rolling, we can still reach our goal!!

12/05/2025

Thank you to the Ramapo Motorcycle Club, Inc. for the generous donation from the Fall Foliage Ride! We appreciate your support and generosity! Thank you for helping to find a treatment for PKD!

12/02/2025

Today is Giving Tuesday! And it’s not too late to get our walk over our fundraising finish line!! Check into your company’s matching policy, post on social, let’s keep this amazing fundraising going as we work toward a cure!

10/24/2025

Thank you to all who attended and fundraised for the Hudson Valley Walk for PKD! While we’ve made great progress, we haven’t yet reached our goal of $24,000. With your help, we can get there.

Donations for the Walk for PKD are accepted through December 31, 2025, and this upcoming season of giving is the perfect time to reach your personal fundraising goal!

Here’s how you can help:
📲 Send a quick email or text to friends and family with your fundraising link.
💬 Share your story on social media and tell others why you walk.
🎁 Ask for donations in lieu of gifts this holiday season.
🤝 Match donations or check if your employer offers a match.

Every gift brings us closer to a future without PKD. Thank you for your continued support and generosity!

Share your fundraising page or donate to the Hudson Valley Walk for PKD today: https://support.pkdcure.org/event/hudson-valley-walk-for-pkd-2025/e679763

09/21/2025

What an amazing, beautiful day for the 2025 Hudson Valley Walk for PKD!! The sun was shining, the temperature was perfect, and it was a beautiful day!

Thank you so much to all of our volunteers, our team captains, everyone who walked, and everyone who donated! And thank you to our sponsors Otsuka, Natera, Vertex, Pamal Broadcasting, UnitedHealthcare and partners at Columbia COE and the Montefiore PKD Program. PKD Foundation

Let’s keep that fundraising going, we can still reach our goal of $24,000! We’ve already raised $14,000!

And if you’d like to become more involved as a volunteer, please reach out! We’re always looking for more volunteers and fresh ideas.

Please feel free to add any photos you’d like to share in the comments!

Can’t wait to see you all in 2026!