PKD Foundation 2025 Impact Report

IMPACT REPORT

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ABOUT US . . . . . . . . . . . . . . . . 6 – 1 1

VOLUNTEERS

RESEARCH. . . . . . . . . . . . . . . . 1 2 – 1 7 HIGHLIGHTS

COMMUNITY .............48 – 59 DEVELOPMENT

REGISTRY . . . . . . . . . . . . . . . 1 8 – 2 1

DONOR .............60 – 65 APPRECIATION

CENTERS OF EXCELLENCE

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ADVOCACY . . . . . . . . . . . . . 2 8 – 3 3 EDUCATION . . . . . . . . . . . 3 4 – 3 7 COMMUNITIES . . . . . . . . 3 8 – 4 3

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CONSOLIDATED. . . . . . . . . . . . . 6 6 – 6 7 FINANCIALS LEADERSHIP

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RESOURCES & WAYS ...............70 – 71 TO GET INVOLVED

Welcome to the PKD Foundation’s 2025 Impact Report.

The polycystic kidney disease (PKD) community has never accepted the status quo—and that determination continues to drive real progress.

This year brought meaningful advances for people and families living with PKD. Breakthroughs in science, progress in care, and the strength of a passionate community are moving the field forward in powerful ways. None of this work would be possible without the generosity and commitment of supporters who believe in a better future for everyone affected by PKD. PKD research is entering one of the most promising moments in its history. Scientific discoveries are opening possibilities once thought out of reach, and therapies targeting the genetic causes of PKD are advancing through the clinical pipeline. With your support, the PKD Foundation invested more than $2 million in 2025 to fund innovative research aimed at developing better treatments. Donor generosity also sustained our patient-powered ADPKD Registry and strengthened partnerships that helped move discoveries from the lab to the clinic faster.

Advocacy also played a critical role this year. During PKD Advocacy Day 2025, more than 100 advocates from 29 states met with lawmakers—on Capitol Hill and virtually—to highlight the needs of the PKD community. Their efforts helped protect Congressionally Directed Medical Research Program (CDMRP) funding, which has provided $80 million for PKD research since 2020, and reinforced the importance of the Living Donor Protection Act in protecting donors and expanding access to life-saving transplants.

Education, care, and community connection also expanded in 2025. We launched PKD Chronicles, a podcast created with support from Otsuka Pharmaceuticals to inform, encourage, and inspire listeners. Educational webinars, including a series on the new KDIGO Guideline, helped patients and clinicians better understand evolving standards in PKD care.

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Access to expert care continues to grow through the PKD Foundation’s Centers of Excellence program. Today, 81 pediatric and adult Centers of Excellence and Partner Clinics across the United States provide coordinated, specialized care for people living with PKD. Across the country, thousands of supporters came together through Walk for PKD events and other community efforts.

These activities raised more than $1.8 million for research while strengthening connections and reminding families living with PKD that they are not alone.

We are deeply grateful to the donors, advocates, researchers, clinicians, volunteers, and partners who make this progress possible. Every step forward reflected in these pages represents hope for the millions of people and families living with PKD—and moves us closer to a future where better treatments, and ultimately a cure, become reality.

With deep appreciation,

Susan Bushnell

Christopher Wess SUSAN BUSHNELL PRESIDENT & CEO PKD FOUNDATION

CHRISTOPHER WESS CHAIR, BOARD OF DIRECTORS PKD FOUNDATION

ABOUT US

OUR VISION END PKD

OUR MISSION WE GIVE HOPE. We fund research, advocate for patients, and build a community for all impacted by PKD. Despite being the fourth leading cause of kidney failure and impacting more than 500,000 people in the U.S., polycystic kidney disease (PKD) is not as widely known as it should be. For more than four decades, the PKD Foundation has worked to remedy this—raising awareness across the country and leading the charge to find better care, new treatments, and a cure for this disease.

This commitment to advancing PKD research is reflected in the Foundation’s crucial programs: •

Over $30 million has been invested in our annual research grant and fellowships program

•

Our Centers of Excellence program supports 81 healthcare centers, each evaluated and selected for working at the highest level of PKD care 2025 IMPACT REPORT 7

•

Our Walk for PKD program has raised over $36 million

•

Advocacy efforts have leveraged more than $1 billion in government funding

The path to a brighter future is only possible through partners like you. Progress­—whether it’s in research, education, advocacy, or care—is strengthened by the support of this community. Together, we’ll continue building toward a future without PKD.

UNDERSTANDING PKD There are two types of PKD: autosomal dominant polycystic kidney disease (ADPKD) and autosomal recessive polycystic kidney disease (ARPKD).

ADPKD is not only the more common type of PKD but one of the most common life-threatening genetic diseases. It’s estimated to affect more than 500,000 Americans and 12.4 million people worldwide.

In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. Over half of those living with this disease will reach this stage by the age

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of 60. Currently, dialysis or transplant are the only treatment options available for kidney failure.

ARPKD is a rare genetic disorder occurring in approximately 1 in 20,000 children, equally affecting boys and girls. While death in the first month of life is a possibility, nearly 75% of ARPKD children survive the newborn period. About 25% of these children may need a transplant or dialysis by the age of 10.

Today, over 90% of babies who make it through the newborn stage live to celebrate their 20th birthday, and 50% won’t need dialysis or a transplant by that time.

ADPKD

~1 in 1,000 people

ARPKD

1 in 20,000 children

20%

20% of patients have no family history of ADPKD 2025 IMPACT REPORT 9

OUR FOUNDING Before 1982, little was known about PKD, and treatment options were extremely limited. Through the strategic partnership of renowned PKD researcher Jared J. Grantham, M.D., and businessman Joseph H. Bruening, the PKD Foundation was created.

At the time, Dr. Grantham was one of the few researchers focused on PKD. His experience combined with Mr. Bruening’s personal connection to the disease and commitment to action sparked the creation of a dedicated nonprofit to support and accelerate research. Together, they united scientists, patients, and supporters to build momentum against a disease that had previously been overlooked.

The passion and persistence of our founders, along with countless families, clinicians, and scientists, have propelled PKD research and care forward.

Today, the Foundation is still the only U.S. organization solely dedicated to ending PKD. Decades of research and collaboration have transformed PKD from a neglected disease into a global area of study with new developments continually emerging. From the Foundation’s early beginnings with modest funding and a small board, the PKD Foundation has grown into the largest private funder of PKD research driving scientific discovery.

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Jared J. Grantham, M.D. PKD Foundation Founder

Jared J. Grantham, M.D. PKD Foundation Founder

Joseph H. Bruening PKD Foundation Founder

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Katharina Hopp, Ph.D. University of Colorado, Denver, Anschutz Medical Campus

RESEARCH HIGHLIGHTS

When the PKD Foundation was founded in 1982, no one could predict where research would go over the coming decades. The Foundation has championed bold research ideas, supported early-career investigators, and helped scientists secure major funding from the National Institutes of Health and the Department of Defense. Now, after more than $30M in Foundation funding, PKD research is advancing at a rapid pace, marking a pivotal moment in discoveries that will positively impact the lives of people living with PKD. Thanks to the dedication of generous supporters who are committed to finding a cure, the Foundation invested $2 million in 2025 to fund 20 groundbreaking research projects and six fellowships.

Recipients were selected through a comprehensive and rigorous review process led by the PKD Foundation Scientific Advisory Panel, with critical input from select patient stakeholders, caregivers, and expert PKD researchers. The selected grants and fellowships supported a wide range of high-impact research to improve outcomes for people with PKD. 2025 IMPACT REPORT 13

Here’s a snapshot of some of the important research we’re funding and how it could impact generations of families with PKD:

Sarah Miller, Ph.D. University of Oklahoma, Health Sciences Center

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•

Drug Repurposing: Exploring new uses for existing drugs, including whether a cholesterol drug can treat PKD and if an existing cancer therapy can treat polycystic liver disease

•

Drug Development: Testing a medicine that mimics the benefits of exercise by activating metabolic pathways that could slow cyst growth

•

Early Disease Prediction Tools: Developing new prognostic tools to predict PKD progression, including a urine test that may forecast the rate of cyst growth before cysts even form

•

Personalized Medicine & Artificial Intelligence (AI): Exploring the use of AI to match treatments to individual patients’ needs

•

Disease Modeling: Growing “mini-kidneys” from patient cells to better study the disease and speed up drug testing

•

Quality of Life Research: Researching quality of life, including how to treat depression that may be associated with PKD

Our funded researchers aren’t the only ones taking a hands-on approach to ending PKD. Chris Chen, Ph.D., and Vanessa Westerfield, leaders of the PKD Foundation’s research team, contributed to the 2025 scientific manuscript, Emerging Therapies in Autosomal Dominant Polycystic Kidney Disease. This

review of multiple ADPKD studies highlights a shift toward targeted, multi-approach treatments that address the underlying genetic cause of the disease. These findings underscore how treatment strategies are moving beyond slowing disease progression and toward more precise methods that could dramatically improve outcomes and change the trajectory of PKD.

“I have learned from personal experience that these PKD Foundation fellowships and grants really make an impact beyond even their funds, as a way of shaping young careers towards a lasting motivation and trajectory in the PKD field.”

- Whitney Besse, M.D. Yale University School of Medicine, PKD Foundation Scientific Advisory Panel Member

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RESEARCH UPDATE Michel Chonchol, M.D.

Head of the Division of Renal Diseases and Hypertension at the University of Colorado Anschutz Medical Campus

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In 2022, Michel Chonchol, M.D., was awarded a three-year PKD Foundation drug repurposing grant for his study, “Feasibility Study of Empagliflozin in Patients with Autosomal Dominant Polycystic Kidney Disease.” SGLT2 inhibitors like empagliflozin are a class of medications already approved for diabetes and some forms of chronic kidney disease. They work by helping the kidneys remove excess sugar and reduce stress on the kidneys, which can slow the decline in kidney function.

ADPKD patients were originally excluded from clinical trials assessing the efficacy of SGLT2 inhibitors for treating chronic kidney disease. Dr. Chonchol was interested in testing whether these drugs could specifically benefit patients with ADPKD. While loss of kidney function in ADPKD has a different cause than other chronic kidney diseases, Dr. Chonchol speculated that the benefits of reducing kidney stress, inflammation, and fluid retention could help protect kidney function and slow cyst growth.

This feasibility study led to the first-ever human study to test whether SGLT2 inhibitors are safe and well tolerated for people with ADPKD. Early data is being collected to establish whether the drug could positively affect kidney health, such as slowing kidney enlargement and improving other kidneyrelated health markers. Additionally, this study lays the foundation for larger studies that could determine if SGLT2 inhibitors will become a new treatment option for PKD. For people with PKD, every new therapy could help delay kidney failure, reduce complications, and improve quality of life. Dr. Chonchol’s work represents a step toward expanding therapies and exploring new ways to protect kidneys of people with ADPKD.

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REGISTRY

The PKD Foundation is accelerating progress in autosomal dominant polycystic kidney disease (ADPKD) by turning patient experiences into powerful, actionable data through the ADPKD Registry.

The ADPKD Registry is more than a database. It’s a growing, patient-powered engine for discovery capturing real-world insights from people living with PKD and transforming them into tools that researchers, clinicians, and policymakers can use to better understand the disease and improve outcomes.

The Registry continues to expand. Enrollment increased nearly 13% over the past year with over 3,600 participants providing data across hundreds of care settings. The Registry’s linked electronic health records (EHRs) grew by 24% in 2025 to almost 300 connections. More EHRs mean richer clinical data beyond patient-reported outcomes. This helps researchers and clinicians learn more about disease progression, complications, and treatment responses with greater accuracy.

This continued growth reflects a shared commitment from the PKD community to move research forward and ensure that lived experiences are shaping the future of care.

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“One of the Foundation’s most significant contributions is the ADPKD Registry, which serves as a critical resource for connecting patients, researchers, and clinicians.

By enabling the collection of real-world data and fostering patient engagement, the Registry will accelerate discovery and support clinical trial readiness. This shared commitment to research will bring us closer to effective therapies and, ultimately, a cure.”

- Terry Watnick, M.D. University of Maryland

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In 2025, the Foundation took a major step forward in expanding access to this data with the launch of the ADPKD Registry Researcher Portal. This new platform was designed to make de-identified, aggregated Registry data more accessible to the scientific community. Since its launch, 45 researchers—including representatives from academia, the pharmaceutical industry, and the FDA—have already explored how Registry data can inform their work.

By lowering barriers for patients to share their data and for researchers to access it, the Registry is fostering greater collaboration, accelerating research, increasing clinical trial awareness, and opening new avenues for discovery.

Behind every data point is a person choosing to contribute to something bigger than themselves. Together, Registry participants are helping shape a future where better treatments and a cure are within reach.

45 Researchers Who Used the Registry Research Portal Over 3,600 Registry Participants

24% Increase in Electronic Health Records 2025 IMPACT REPORT 21

CENTERS OF EXCELLENCE

Finding PKD-specific care and the right healthcare provider are the first steps in a patient’s journey. Access to expert, multidisciplinary, coordinated PKD care is essential for improving outcomes and quality of life for people and families living with PKD. Through the PKD Foundation’s Centers of Excellence (COE) program, we continue to strengthen a nationwide network of clinics dedicated to delivering high-quality, specialized PKD care.

Three years ago, we launched our inaugural cohort of COEs and Partner Clinics. As part of our three-year renewal cycle, clinics from the 2022 cohort underwent a rigorous review process in 2025 to maintain their designation.

The Foundation redesignated 36 clinics, including 27 COEs and nine Partner Clinics, reflecting the sustained high standards of PKD care at these medical centers across the nation. We’re also proud to recognize that one clinic advanced from Partner Clinic to full COE status—an important milestone that highlights the strength and growth this network produces.

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With these updates, the PKD Foundation now supports 81 COEs and Partner Clinics across the country, serving both pediatric and adult patients. In 2025, these clinics provided care to a total of 16,600 patients, 1,000 more than the previous year.

Within the Centers of Excellence network, patient navigators play a vital role in delivering coordinated, multidisciplinary PKD care. In 2025, the Foundation invested $470,000 in funding for Care Team Grants, helping to enhance collaboration across health specialties and strengthen the delivery of comprehensive PKD care. This funding helps ensure patients are guided through each step of their journey, connecting them to specialized services, and ensuring timely, seamless access to the expertise and resources they need.

Together, these efforts reflect an unwavering dedication to improving care today while advancing toward better treatments and, ultimately, a cure. Our supporters help power the COE program, ensuring patients can access the highlevel of clinical expertise and support they need to better manage their disease, maintain and improve their quality of life, and plan for the future.

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THE STATS 16,600 Patients Served

15,200 ADPKD Patients 1,400 ARPKD Patients

81 Care Centers 2025 IMPACT REPORT 25

CENTERS OF EXCELLENCE NETWORK MAP

KEY CENTERS OF EXCELLENCE PEDIATRIC CENTERS OF EXCELLENCE PARTNER CLINICS PEDIATRIC CLINICS

For more info, click here for resources.

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Did You Know: • More than 30 COE network care centers participated in investigator-led PKD research in 2025.

• COE network care centers published more than 68 professional papers related to PKD care, management, and treatment in 2025.

“The PKD Foundation care team grant has significantly improved the level of care our clinic provides individuals living with ADPKD. By fully supporting a dedicated patient navigator position, the funding has allowed us to greatly enhance patient education, improve coordination across the entire care process, and reduce delays that often prevent timely treatment.”

- Recipient of a Care Team Grant

2025 IMPACT IMPACT REPORT REPORT 27 27 2025

ADVOCACY

Ending PKD and improving the quality of life for people with the disease requires persistent and unified advocacy. Alongside passionate community advocates, dedicated lawmakers, and partnerships with other kidney health organizations, we’re changing policies and driving resources forward to build a healthier future for generations of families impacted

by PKD. In our first hybrid Advocacy Days event, PKD Foundation advocates from around the country brought the voices of the PKD community to Capitol Hill, both virtually and in person. Spanning two days, over 100 advocates took part in 104 meetings with lawmakers and legislative staff. Participants used these meetings to champion policies that support people living with PKD and their loved ones.

The Living Donor Protection Act (H.R. 4582/4583), also known as the LDPA, continues to be a key piece of legislation the Foundation advocates for during our Advocacy Days events and beyond. This bipartisan legislation that was introduced in 2014 would establish protections for living organ donors, ensuring they aren’t penalized by insurance companies for their generosity.

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At the state level, the District of Columbia joined 35 other states in enacting LDPA laws, an important step toward removing barriers to lifesaving donations. At the federal level, our previous advocacy efforts helped with the LDPA’s reintroduction in the House of Representatives with hopes of the act passing in 2026.

Each year, PKD researchers rely on the Congressionally Directed Medical Research Programs (CDMRP) for funding to move scientific discoveries forward. In 2025, the program was cut by 57%—from $1.5 billion to $650 million—directly impacting current and future PKD research. This activated our community. Many reached out to their representatives through our Advocacy Alert email program to voice their concerns and demand change, while one Advocacy Champion spoke directly to Congress. On November 18, Shandel “Shandy” Atoigue delivered a powerful speech before Congress, sharing her PKD journey and urging lawmakers to restore CDMRP funding.

With every conversation, every meeting, and every advocate who raises their voice, we continue elevating the needs of the PKD community to lawmakers. We will keep championing policies that meaningfully impact the lives of those living with this disease and push for funding that will bring us closer to a cure.

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“Thank you for supporting my daughter Dylan’s participation as an Advocacy Champion and state lead. I’ve never been prouder than watching her advocate on behalf of herself and others on the Hill that day. She was excited, empowered, and most importantly, hopeful.

For my part, I share in her renewed energy, enthusiasm, and hope. It’s due entirely to spending a few days in the company of such inspiring people. I’m so grateful for all the Advocacy Champions who came and shared their voices and support, not only on the Hill, but with each other. Thank you again for your part in making this happen.”

- Consuelo Bova PKD Advocate and Parent

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58 Advocacy Champions

Hybrid Advocacy Days:

101 participants

29 states

104 meetings 2025 IMPACT REPORT 33

EDUCATION

Access to clear, reliable information empowers individuals and families in the PKD community to make informed decisions about their health. In 2025, the PKD Foundation expanded its library of resources to include new educational handouts, webinars, and our first ever podcast.

Each resource covers high demand topics, provides the most up-to-date information, and uses language that’s easy to understand across a variety of audiences.

Throughout the year, the Foundation hosted five patient-facing educational webinars designed to help people better understand and navigate life with PKD. In winter 2025, the PKD Foundation hosted the webinar, Research 101: Driving Progress Through Clinical Trials and the ADPKD Registry. Led by Chris Chen, Ph.D., the Foundation’s vice president of research programs, the session explored the latest cutting-edge developments in PKD research, ongoing clinical trials, and the important role of the ADPKD Registry in advancing scientific discovery.

In our four-part webinar series, Confidently Navigating ADPKD: Understanding the New KDIGO Guideline, we brought together expert nephrologists and patient voices to explain the new 2025 clinical practice guideline and what it means for people living with ADPKD. Topics ranged from diagnosis and treatment to whole body impact and special considerations for women and children.

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Understanding the KDIGO 2025 ADPKD Clinical Guideline A Plain Language Guide

Beyond live educational programming, we developed two new publications for individuals living with ADPKD. Tolvaptan Take-Home Tips walks patients who’ve been prescribed the PKD treatment, tolvaptan, through what to expect and how to manage treatment in their daily lives.

Understanding the New KDIGO 2025 Guideline: A Plain Language Guide translates the complex recommendations of this clinical guideline into plain language so patients and families can better understand and advocate for the latest standards in ADPKD care.

With generous support from Otsuka Pharmaceuticals, we launched a brand-new monthly podcast, PKD Chronicles: Navigating Life with Polycystic Kidney Disease. Each episode offers honest conversations, expert insights, and real stories from the PKD community to help guide, support, and inspire people on their PKD journey.

Looking ahead, the PKD Foundation is developing a comprehensive education strategy to guide future resources and programming. This effort will help ensure that everyone in the PKD community has access to helpful, accurate, and upto-date information at every stage of their PKD journey. New projects are already in development, and we’re excited to carry this momentum into 2026 to further empower individuals and families living with both ARPKD and ADPKD.

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2 New Educational Guides 5 Webinars for PKD Families 5,000+ Webinar Views 3,600+ Downloads of the PKD Chronicles Podcast in 2025 “I enjoyed hearing about the research that’s currently being done on potential treatments. It felt hopeful, but also as a person who just learned I have PKD a few months ago, it was interesting to learn more about the biology of what’s actually happening to the kidneys on a molecular level.”

- Research 101 Webinar Participant 2025 IMPACT REPORT 37

COMMUNITIES

When it comes to managing a disease like PKD, it’s especially important to have a strong support system. That’s where PKD Foundation Communities come in.

Across the country, 51 local PKD Foundation Communities bring together patients, caregivers, families, researchers, clinicians, and friends— providing support and showing families they are not alone on their journey.

Beyond local groups, two specialized virtual communities ensure that support reaches everyone in need: PKD Thrive, designed for young adults navigating PKD with courage and camaraderie, and PKD Parents, a safe and empowering space for parents and caregivers of children with ARPKD and ADPKD. Whether gathering virtually or meeting in person, communities create powerful spaces to share trusted PKD Foundation resources, connect over real-life experiences, and learn from expert voices who bring hope and knowledge to the forefront of PKD care.

2025 IMPACT REPORT 39

PKD Foundation Communities also provide critical resources. They serve as a trusted source of education, sharing the latest information on the rapidly evolving science and management of PKD. Meetings cover a wide range of topics, from understanding the stages of the disease and what to expect, to organ transplantation and living donation. Many communities also welcome specialists from their local PKD Foundation’s Centers of Excellence, giving participants the opportunity to learn directly from experts and ask questions in a supportive setting.

Together, these communities don’t just connect people—they amplify strength, resilience, and hope.

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Number of Community Meetings in 2025:

113 Number of Communities:

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PKD COMMUNITIES are a place where everyone is welcome: PKD patients, caregivers, family members, researchers, clinicians, and friends.

PKD FOUNDATION COMMUNITIES: Local Communities: communities based in a specific geographic location PKD Thrive: a virtual community for young adults with PKD PKD Parents: a virtual community for parents of children with ARPKD and ADPKD

For more info, click here for resources.

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“There’s a noticeable sense of relief and reassurance when people can hear directly from physicians and specialists in a more relaxed, accessible setting, like a community meeting. It allows them to ask questions they may not have had time—or felt comfortable asking—during regular appointments.

Having access to knowledgeable speakers also builds trust and confidence, showing that there are doctors and professionals who are accessible and invested in the community. That combination of shared experience and expert guidance can be incredibly empowering for patients and their families.”

- Linda Lebowitz NYC PKD Connect Ambassador

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VOLUNTEERS

Facing a life-long genetic disease like PKD is complex, deeply personal, and affects nearly every aspect of a person’s life. Ensuring no one walks alone with this disease begins with the support of our passionate volunteers.

Whether it’s advocating on Capitol Hill, lending an ear as a peer mentor, organizing a Walk for PKD event, providing resources at community meetings, or helping evaluate PKD research grant applications, each of these leaders makes the PKD community stronger.

In 2025, volunteers dedicated more than 15,000 hours of their time to our research, advocacy, education, awareness, and community programs. Their generosity embodies the mission of the PKD Foundation—it not only inspires hope in their communities but drives real change for those affected by this disease.

Much of the progress we’ve made toward our vision of ending PKD was made possible through the partnership and commitment of our volunteers. The gratitude we have for the nearly 800 volunteers whose dedication and compassion continue propelling us toward a brighter future is immeasurable.

Thank you for all that you do for the PKD community.

2025 IMPACT REPORT 45

270 Total Volunteers: 795 Total Volunteer Hours: 15,742 Volunteer Leaders:

Value of Volunteer Hours:

Nearly $570,000* *Per University of Maryland’s Do Good Institute’s value estimation.

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COMMUNITY DEVELOPMENT

Ending polycystic kidney disease (PKD) requires unwavering commitment—and every step, stride, and act of generosity brings us closer to ending this disease. Each year, fundraising events transform determination into action, powering the research and programs that move us toward lifesaving treatments and, ultimately, a cure.

For 25 years, there’s been one event that unites patients, families, friends, researchers, and physicians across the country—the Walk for PKD. The Walk continues to be the nation’s largest fundraising event for PKD. Last year alone, we raised over $1.1 million toward our vision to end PKD. In 2025, 28 communities hosted Walk for PKD events, each one a vibrant expression of support, compassion, and resilience. Many included opportunities for patients to meet physicians from their local PKD Foundation Center of Excellence and other families impacted by PKD. And through our Walk for PKD—Your Way program, supporters across the U.S. found their own meaningful way to join the movement, no matter where they lived. Between local community events and Walk for PKD—Your Way, over 400 teams, totaling more than 4,200 Walkers, hit the pavement with the shared goal of ending PKD. 2025 IMPACT REPORT 49

Like the Walk for PKD, spreading PKD awareness through the Bank of America Chicago Marathon is another integral part of our fall fundraising season. In 2025, 19 runners laced up their sneakers and pinned their PKD Foundation racing bibs. Their enthusiasm didn’t just sustain them through the 26.2 miles to the finish line; it ignited incredible generosity. Collectively, last year’s runners more than doubled the donations from 2024, surpassing $66,000.

Throughout 2025, other annual events led by dedicated supporters across the country fueled additional funding for the Foundation. Karyn and Jerry Waxman spearheaded the 24th Annual PKD Applied Underwriters Invitational golf tournament, raising over $120,000. Hosted by Toni Stuart, the Las Vegas PKD Social—an afternoon of appetizers, cocktails, and a silent auction—raised nearly $12,000. The 21st Annual Celtic Marketing Golf Outing, hosted by Dan Hughes, added nearly $34,000.The Della Carpini family hosted the Angels Giving Back 5K and golf events, honoring Mario and Valia Coletta, raising $85,000. And in Miami, Bekki and Mike Haggard’s dazzling Kidney Casino for a Cure brought in nearly $360,000 toward our vision of ending PKD. Fundraising is an “every season” event. With the PKD Foundation’s Fundraise Your Way program, anyone can start a fundraiser and make a difference in the PKD community.

Last year, these fundraisers spanned a wide range of events—from benefit concerts and memorials to marathons and birthday celebrations.

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All of these fundraising events in 2025 made a substantial impact, raising over $1.8 million toward our mission. As you read about the advances in research, the educational resources provided, and the support extended to the PKD community throughout this report, remember this: every breakthrough is powered by people like you. Your dedication fuels hope. Your generosity accelerates progress. Thank you to the PKD Foundation’s extraordinary volunteers, fundraisers, and event attendees. Your partnership is not just appreciated—it is essential to ending PKD.

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SPECIAL EVENTS All totals are approximate.

Kidney Casino for a Cure: $360,000 Annual PKD Applied Underwriters Invitational Golf Event: $124,000 Angels Giving Back: $85,000 Bank of America Chicago Marathon 2025: Number of Participants/Runners: 19 Total Raised: $66,000

Celtic Marketing Golf Outing: $34,000 Las Vegas Social: $12,000 52 2025 IMPACT REPORT

WATCH TO EXPERIENCE THE 2025 WALK FOR PKD 2025 IMPACT REPORT 53

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2025 Walk for PKD Total Raised: $1.1 Million Community Walks: 28 Walk Your Way Events: 16 Total Teams: 407 Total Walkers: 4,245 2025 IMPACT REPORT 55

TOP WALK EVENTS *Totals as of December 31, 2025

1. San Antonio Walk for PKD - $165,102 2. Boston Walk for PKD - $103,621 3. New Jersey Walk for PKD - $62,406 4. Milwaukee Walk for PKD - $58,147 5. Tampa Walk for PKD - $56,185 6. Twin Cities Walk for PKD - $55,216 7. Pittsburgh Walk for PKD - $50,618 8. St. Louis Walk for PKD - $45,138 9. Houston Walk for PKD - $40,560 46 2024IMPACT IMPACTREPORT REPORT 56 2025

10. Los Angeles Walk for PKD - $38,915

TOP TEAMS

*Totals as of December 31, 2025

1. Patti’s Partners to Find a Cure for PKD $47,435 2. Gilda and Ivan’s Investors for a PKD Cure $34,375 3. CJ’s Crew - $28,771 4. Repa’s Kidney Kickers - $18,034 5. Wipe Out PKD! - $17,585 6. Mighty Medugnos - $15,392 7. Timotha’s Titans - $14,440 8. Springhill Strollers - $13,972 9. Producers - $13,941 10. Marilyn’s Marchers - $12,194 2025 IMPACT REPORT 57

“It was heartbreaking that my dad wasn’t there to cheer me on, and I missed him more than I could ever explain. But I truly felt like I was carrying his torch and doing my part to move the PKD Foundation closer to a cure, which was his dream.

Running for the PKD Foundation made the experience of running a marathon even more meaningful.”

- Colleen Andrews 2025 Bank of America Chicago Marathon Runner 58 2025 IMPACT REPORT

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DONOR APPRECIATION

OUR GENEROUS DONORS

We are grateful for the individuals, corporations, and foundations whose gifts support our mission to find treatments and a cure for PKD.

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Gift period: January 2025 – December 2025

$1,000,000+ The following individuals/families are currently making transformational gifts to our organization through a pledge commitment.

Catherine Blakley and Owen Harper Jody Blatman Susan and Allen Branch The Dabney Family Tom and Jeannie Flesch Gilbert Family Michael and Bekki Haggard The Klingbeil Family Anne Lehker and Sam Slaughter Jamie Lloyd David Robinson Robert and Linda Roth Jordan and Laura Stolper The Towey Family Janice Wightman

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Tom and Jeannie Flesch Bruce and Nancy Winn

$100,000 to $999,999

Anonymous Michael and Bekki Haggard Otsuka America Pharmaceutical, Inc. Susan and Andrew Schwartz Eric Thompson

$50,000 to $99,999

Angels Giving Back Arthur Cohn Thomas S. Kaplan and Daphne Recanati Kaplan Family The Roger L. Kohn and Kay M. Gilbert Fund Amy and Jason Omenn Robert and Linda Roth Harriet and Edward Tomlinson The Towey Family Vertex Pharmaceuticals

$25,000 to $49,999

Anonymous (2) The Bialer Family Foundation Helen Boen Stephen and Marni Cain Gail and Paul Fazzina

George Fleck, in memory of Joan Kerr Fleck Ted Gold Donald Goldstein The Shirley and Leonard Goldstein Foundation Marcia Hindle and Family The Larsen Foundation Jamie Lloyd Amy and Michael Manelli Navin Manglani Douglas and Rebecca McCarron Natera Inc. Novartis Pharma AG Patti and Mark Ruffin Ryan’s Reason Jane and James Schwendinger Stephanie and Jim Seaborg Kevin and Traci Short Spaulding Trust Jordan and Laura Stolper

$10,000 to $24,999

Michael Agostino Anonymous (2) The Vera B. Arrison Foundation Beth Israel Deaconess Medical Center Catherine Blakley and Owen Harper Joan and Fred Brengel Family Foundation

Russell and Esperanza Buckhalt Carylon, Julius, and Marcie Hemmelstein Foundation Celtic Marketing Food Brokers, Inc. Katherine and Fred Cohen The Lori and Michael A. Cohen Charitable Fund of the Dallas Jewish Community Foundation Daniel and Susan Conway The Dabney Family Shirish and Pratima Desai and Family Jay and Elaine Dolgin Dale and Tamara Donohoe Egan Company Lewis Eisenberg Cory and Amanda Fite Glenn and Beth Frommer Coleen Gee Gilbert Family GondolaBio Gordon Hartman Family Foundation Becca and Derek Groothuis William Andrew “Andy” Haggard Charles and Kathryn Hart James Hastey Esther Hill IGN Foundation James Avery Craftsman, Inc JMKJ Laramie Fund Peggy Katz

Mark and Lori Kempf Andrea and Richard Kringstein Florence Lanter-Spesard Anne Lehker and Sam Slaughter The Thalia & George Liberatos Foundation, Inc. Erik Linn Gail Low-McGillen Renne C Lu, Bang-woel Lu Foundation Michael Mack John Mallard Mayo Clinic Rochester Lisa McElroy and Richard Blackshaw Todd Michaels Mississippi Polymers, Inc. Rohan Nirody Sarah Osborn and Randolph DelFranco Poly-Cam, Inc Edith Pulscak Denis Repa Sybil Rosenberg Ross Foundation Harold and Barbara Saul Rachel and Eric Shry Joseph and Gail Skeele Tracy and Stephan St Amour and Family Dylan Sumner

Jamie and Rob Taylor Joseph Traba Virginia Turba Upton Foundation Liliane M Vassberg, Ph.D. Jeri and David Vick Karyn and Jerold Waxman David and Lynne Weinberg Family Foundation Alyson and Chris Wess Maggie White Shirley and David White Janice Wightman Walter Zimmerman

$5,000 TO $9,999

Priscilla Alexander Dennis Alonso Laurel Alyea Gerald and Frances Anderson Anonymous (6) Christine and John Bakalar Shaun Baker Ashley Barrett Battier Take Charge Foundation David and Sharon Bender Eva & Felipe Blanco Jody Blatman Liesl and David Bohan 2025 IMPACT REPORT 63

Gift period: January 2025 – December 2025 Matthew and Jacqueline Bombeck Susan and Allen Branch Marc Brumer Robert and Judith Burgstahler Barbara and Nicholas Bush Mary Helen Buttman Donna Cantalupo Peter and Alexandria Carney David Casarotto and Danielle DeLuca Casarotto Ken and Lisa Cashin Vicki and James Chandler Arnold and Barbara Chonko Timothy and Grace Clackson Geoffrey and Andrea Clark Cole, Scott & Kissane, P.A. Mary and Frank Condella Marilyn and Richard Cox William and Cecille Daniel Suzanne Dickson & Steve Stautzenbach Natasha Diemer David Earling and Maria Nicolo Pedro Echarte Thomas Edwards Melissa Eichman Krista Endsley Ann Etergino

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The Falsetti Family Anna and Michael Feiler Mike Feldman Adam Finkel Edmond Fitzgerald and Jennifer Lynch Brent and Debbie Fredberg Leslie Gattas Gayle’s Soldiers Melody and Mark Gensheimer John Mark and Bridget Gidley Sarjit Gil, M.D. Scott and Christine Giles Ira and Zari Ginsburg Philip Gold Arza and Brian Goldstein The Greehey Family Foundation Kim Gronendahl, in loving memory of Holly Leyes and Terry Valentine Trevor Harder, in memory of Maureen Harder William Hardisty Robin Hayes Rich & Gerrie Heibel Eiko Hoduchi Patricia Hofmann Lewis Jack Harold and Lori Johnson

Nancy and Dean Kaminski Allen Kinkle Jason and Ann Labuda Stacy Laffere Virginia Leech Tram Le-Nguyen Dale Lewis William Lewis Sue Forese Lienhard James and Ingrid Lisle Kevin Lofton and Sabrina Shannon Catherine and Michael Manning Mary, David. and Andy Martin in honor of Charles Martin Erica and Matthew Mazon Ericka Meeks Methodist Specialty and Transplant Hospital Shari McNulty MKL Foundation, Inc. Richard Moore Ned and Michelle Neely Russell and Sandra Peppet Meltem and Dan Priest Antonio Puglielli, in memory of Abi Seshsdri Jarrod Rickard and Amanda Yen Richard Roth Larry and Tracy Sala

Diane and Thomas Siebrasse Dorothy Sites Neal and Deborah Slafsky Edward and Aida Snyder Geraldine Specht Sun Life U.S. Norm Taffe and Julie Bennett-Taffe Lisa and Brian Tannebaum Sidney and Kathryn Taurel Foundation Barbara and Richard Thompson Triple H Enterprises, Inc University Health Kimberly Wald Amy and Jon Watkins Rachel Wilson Sally and Murrell Wilson Edward Zebersky

LEGACY GIFTS

The Bloom Charitable Trust Brennan Family Trust S. Brower Living Trust Estate of George Hetley, in memory of Carolyn Hetley and honor of George Hetley Herbert S. Kipnis and Nancy Tuttle Trusts KSM Family Trust Thelma R. Lublin Trust Doris Mario and Carol Taylor Trusts Estate of Myrna Socol Helmut and Auli Ann Will Trust

LEARN MORE ABOUT WAYS TO GIVE PKDCURE.ORG 816-300-1323 DONORRELATIONS@PKDCURE.ORG

2025 IMPACT REPORT 65

CONSOLIDATED FINANCIALS

FINANCIAL HIGHLIGHTS Fiscal Year 2025 Audited Financials (7/1/24–6/30/25)

FY25 Balance Sheet (In Millions)

FY25 Total Revenue

FY25 Total Expenses

Contributions: $9.8 Million; 78% Net Investment Return: $2.5 Million; 20% Contributions - Non-Cash: $0.3 Million; 2%

Research: $4.8 Million; 47% Awareness & Advocacy: $1.6 Million; 16% Administrative: $1.5 Million; 15% Education & Support: $1.3 Million; 13% Development: $0.9 Million; 9%

2025 IMPACT REPORT 67

LEADERSHIP

BOARD OF DIRECTORS OFFICERS

CHRISTOPHER WESS BOARD CHAIR

AMANDA YEN VICE CHAIR

NAVIN MANGLANI IMMEDIATE PAST CHAIR

GLENN FROMMER TREASURER FINANCIAL OVERSIGHT AND INVESTMENT COMMITTEE CHAIR

SHAWNA WEBB SECRETARY

DIRECTORS

STU CAPLAN

FOUAD T. CHEBIB, M.D., FASN

MICHAEL HAGGARD

GREG MAINOLFI

JULIE MARSHALL

ALIX PICCIRILLI GOVERNANCE COMMITTEE CHAIR

DEBORA PLUNKETT

KEVIN RYAN

VICTORIA STONE

CRISTEN WATHEN

VISHAL PATEL, M.D.

SCIENTIFIC ADVISORY PANEL OFFICERS

VISHAL PATEL, M.D. CHAIR

NEERA DAHL, M.D. VICE CHAIR

MEMBERS

WHITNEY BESSE, M.D.

MICHAEL CAPLAN, M.D., PH.D.

PETER HARRIS, PH.D.

ERUM HARTUNG, M.D.

KATHARINA HOPP, PH.D.

MOE MAHJOUB, PH.D.

TAKAMITSU SAIGUSA, M.D.

STEPHEN SELIGER, M.D.

PAMELA TRAN, PH.D.

OWEN WOODWARD, PH.D.

CARMEN GLEASON CHIEF OPERATING OFFICER

MICHAEL NIEKAMP CHIEF FINANCIAL OFFICER

CRAIG ROBERTSON CHIEF GROWTH OFFICER

MAX CHRISTOPH LIEBAU, M.D.

LEADERSHIP TEAM SUSAN BUSHNELL PRESIDENT & CHIEF EXECUTIVE OFFICER

2025 IMPACT REPORT 69

RESOURCES & WAYS TO GET INVOLVED The progress highlighted in this report is made possible by a dedicated community committed to advancing research, supporting patients and families, and driving meaningful change for those living with PKD. This appendix provides quick access to key resources and opportunities to get involved with the PKD Foundation, from educational tools and support programs to advocacy efforts, events, and ways to give. Whether you’re looking to stay informed, connect with others, or take action, there are many ways to be part of this work.

Together, we can continue accelerating research progress and improving the lives of everyone affected by PKD.

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RESOURCES:

GET INVOLVED:

PKD Handbooks and Educational Handouts General information about PKD, links to printable handouts, and PKD Patient Handbooks

Treatment and Clinical Studies Information Information and FAQs about ADPKD treatment and ARPKD and ADPKD clinical trials

PKD Chronicles PKD Foundation podcast, produced by the PKD Foundation and presented generously by Otsuka Pharmaceuticals

Ways to Donate Options to help accelerate PKD research and care

PKD Foundation Volunteer Opportunities Ways to volunteer at the PKD Foundation, both in-person and virtually

ADPKD Registry The nation’s first dedicated ADPKD Registry for patients to provided health records and share their disease experience to power the path to a cure

Advocacy

PKD Foundation on-demand educational videos

How to use your voice to increase research funding, bring new treatments to patients, and ensure the best care for people with PKD

Centers of Excellence Map

Communities Map

Video Learning Library

Click the resource name to explore.

2025 IMPACT REPORT 71

STAY IN TOUCH WITH US THROUGHOUT THE YEAR! PKDCURE.ORG

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