PKD Foundation 2024 Impact Report

2 0 2 4 IMPACT REPORT

ABOUT US . . . . . . . . . . . . . . . 6 - 9 RESEARCH . . . . . . . . . . . . . . 1 0 - 1 5 REGISTRY . . . . . . . . . . . . . . . 1 6 - 1 9 CENTERS OF EXCELLENCE . . . . . . . . . . . 2 0 - 2 5

COMMUNITY & VOLUNTEERS . . . . . . . . . . . . . . . 3 4 - 3 9 COMMUNITY DEVELOPMENT . . . . . . . . . . . . . . . 4 0 - 4 7 DONOR APPRECIATION . . . . . . . . . . . . . . . 4 8 - 5 1

ADVOCACY . . . . . . . . . . . . . 2 6 - 2 9

CONSOLIDATED ...............52 - 53 FINANCIALS

EDUCATION. . . . . . . . . . . . . . . 3 0 - 3 3

LEADERSHIP

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Dear Supporters and Partners, We are excited to present the PKD Foundation 2024 Impact Report. The following pages are more than a recap of milestones over the past year. They are a celebration of the collective energy, generosity, and advocacy that fuels our progress toward better treatments, stronger support systems, and ultimately, a cure for polycystic kidney disease.

Due to the generosity and dedication of our supporters and partners, we have established wonderful momentum and have accomplished a great deal in 2024.

Here are just some of the 2024 highlights: •

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The PKD Foundation’s Centers of Excellence (COE) program grew significantly, expanding access to high-quality, specialized care across the country. We saw a 30% expansion of the COE network, with the designation of three new COEs, 14 new Partner Clinics, four new Pediatric Clinics, and for the first time, four Pediatric COEs, highlighting our commitment to young people with PKD. The growth in the COE program resulted in 15,600 patients receiving care, a 23% increase from 2023.

In 2024, the ADPKD Registry included over 3,200 participants and 237 linked electronic health records used to advance research and inform care from patient-provided data. This year, PKD Foundation staff, researchers, and clinicians used this data to study quality of life during various stages of PKD. Their article, “Pain and Health-Related Quality of Life in Autosomal Dominant Polycystic Kidney Disease: Results from a National Patient-Powered Registry,” was highlighted in the journal, Kidney Health, and received recognition for its significant contribution to the field.

Our commitment to advancing science was further demonstrated by awarding 10 PKD research grants, three research fellowships, and funded numerous scientific meetings. This financial commitment to research allows us to invest in some of the most promising ideas and approaches in PKD treatment today.

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From coast to coast, Walk for PKD events brought together thousands of supporters and raised over $1M to fuel progress toward PKD research. These Walks are not only a source of critical funding but also a testament to the strength and unity of our community.

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Due in large part to our advocacy efforts, five PKD researchers were awarded $15.66 million in government funded grants—a 347% increase from 2023—representing a major step forward in securing federal funding for PKD research.

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Our community groups continued to provide support and education, reminding those with PKD they are not alone. The shared experiences, understanding, and encouragement coming from our communities can make all the difference in the lives of those living with PKD and their loved ones.

The collective impact you will read about in this report is powered by people like you who give, volunteer, advocate, and rally around our mission. Your support allows us to scale our efforts, reach more families, and drive forward lasting change.

There is still much to do, and we are energized for what lies ahead. Together, we will continue to push boundaries and forge new paths with the goal of improving lives and ending PKD. With deep appreciation, Susan Bushnell Navin Manglani

SUSAN BUSHNELL PRESIDENT & CEO PKD FOUNDATION

NAVIN MANGLANI BOARD & EXECUTIVE COMMITTEE CHAIR PKD FOUNDATION

ABOUT US

OUR MISSION WE GIVE HOPE. We fund research, advocate for patients, and build a community for all impacted by PKD. For more than 40 years, the PKD Foundation has been the leading force behind finding treatments and a cure for polycystic kidney disease (PKD) in the U.S. Founded by visionary researcher Jared J. Grantham, M.D., and his business partner, Joseph H. Bruening, the Foundation has helped change the world’s understanding of PKD dramatically.

In our dedication to end PKD, the Foundation has raised over $36 million through the Walk for PKD program, leveraged more than $1 billion in government funding for PKD research, and annually funds research grants and fellowships to advance the study of this disease.

None of this would be possible without supporters like you. With the help of this community, we continue to drive education, advocacy, awareness, and research to ensure a healthier future for everyone impacted by PKD.

OUR VISION END PKD 2024 IMPACT REPORT 7

WHAT IS PKD? There are two types of PKD. Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases and the fourth leading cause of kidney failure. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. For over 50% of people with ADPKD, this happens by the age of 60. Dialysis or a transplant are the only options currently available to treat kidney failure.

Autosomal recessive polycystic kidney disease (ARPKD) is a rare genetic disorder occurring in approximately 1 in 25,000 children, equally affecting boys and girls. While ARPKD can cause death in the first month of life, almost 80% of ARPKD children survive the newborn period.

Although one-third of ARPKD patients need a transplant or dialysis within the first 10 years, the outlook for this disease has significantly improved. Today, more than 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.

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PKD is one of the most common genetic diseases

~ 12 million people have ADPKD worldwide

1 in 25,000 children have ARPKD 2024 IMPACT REPORT 9

RESEARCH

RESEARCH HIGHLIGHTS At the PKD Foundation, we are driven by one goal, a future without PKD. An important step in realizing our vision of ending PKD is funding innovative research. Through our research grant and fellowships program, we invest in cutting-edge PKD research, funding projects that hold the potential for more effective treatments and, ultimately, a cure. Selecting studies for funding is a joint effort between the Foundation’s Scientific Advisory Panel (SAP), PKD patients and caregivers, and ad hoc PKD expert scientists.

In 2024, we distributed more than $2 million in research funding. Ten new research grants and three new research fellowships were awarded, as well as second-year funding for the 10 research grants and three fellowships that were announced in 2023.

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HIGHLIGHTED PROJECTS FUNDED IN 2024: Brittany Lasseigne, Ph.D., University of Alabama/Birmingham This study will use machine learning to determine if certain drugs, which are already approved to treat other diseases, might be effective for PKD patients. It will also consider new drug combinations, while taking into account potential side effects of these therapies.

Feng Qian, Ph.D., University of Maryland, Baltimore Jumping off a recently published study which unveiled a crucial connection between fibrocystin/polyductin (FPC) protein and mitochondria in cyst formation, this study seeks to determine whether introducing an extra copy of a protein called ICD15 into mitochondria might alleviate cyst development in PKD. If so, it could open new avenues for therapies and interventions.

Gregory Germino, M.D., National Institute of Diabetes and Digestive and Kidney Diseases (NIH) It’s difficult to track how fast or slow the progression of ADPKD will be. Dr. Germino developed a simple, mouse-based organoid system that develops cysts in less than 10 days. The study will allow scientists to better understand the progress of the disease and understand what treatments can be most effective.

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New: 10 PKD research grants and 3 research fellowships

$2 MILLION IN RESEARCH FUNDING

$40,000 awarded in Core Grants

2023 Cycle Second-Year Funding: 10 PKD research grants and 3 fellowships 2024 IMPACT REPORT 13

“With the PKD Foundation’s support, we discovered a new pathway forward to treat ARPKD based upon drugs already approved for clinical use to treat cystic fibrosis.

Because these drugs are already FDA approved, with further clinical development, we can provide a fast-track for their use in ARPKD. ” - Liudmila Cebotaru, M.D., J.D., LLM, Johns Hopkins School of Medicine 14 2024 IMPACT REPORT

RESEARCH UPDATE Vishal Patel, M.D.

Yin Quan-Yuen Distinguished Professor, Department of Internal Medicine, University of Texas Medical Center Chair, Scientific Advisory Panel, PKD Foundation In 2014, Vishal Patel, M.D., received a PKD Foundation research grant to investigate the miR-17 family of microRNAs. MicroRNAs are natural, short RNA strands that regulate expression of their target genes. In ADPKD patients, the miR-17 family was found to be upregulated, leading to decreased polycystin gene expression and faster cyst growth.

Dr. Patel utilized the $160K pilot study funding from the PKD Foundation to better understand this process. The results formed the basis for two large federal grants (each worth approximately $2M) to examine anti-sense molecules that inhibit miR-17 as a therapy for ADPKD. These findings led to a collaboration between Dr. Patel and Regulus Therapeutics, which will cumulatively spend $250M+ in the clinical development of the anti-miR-17 compound, farabursen, for individuals with ADPKD. The recently completed Phase 1b trial has preliminarily shown the potential to halt kidney volume growth and increase polycystin expression in initial ADPKD patients. Phase 3 studies are expected to start in 2025.

REGISTRY

REGISTRY HIGHLIGHTS The PKD Foundation not only funds cutting-edge research, we’re also advancing scientific discovery and the understanding of autosomal dominant polycystic kidney disease (ADPKD) by harnessing real-world patient data through the ADPKD Registry.

The ADPKD Registry is a centralized resource containing de-identified health information from PKD patients along with their reported experiences. With over 3,200 participants and 237 linked electronic health records (from more than 100 clinics), the Registry is an important tool in connecting patients to ongoing clinical trials and helping researchers and healthcare professionals gain valuable insights into disease progression, potential treatments, and outcomes.

In 2024, PKD Foundation staff, alongside leading PKD researchers and clinicians, utilized Registry data to conduct a study exploring how pain, discomfort, and emotional distress affect individuals at all stages of ADPKD. The study’s results were crafted into the article,

“Pain and Health-Related Quality of Life in Autosomal Dominant Polycystic Kidney Disease: Results from a National Patient-Powered Registry,” that was published in Kidney Health.

These findings help inform healthcare professionals, researchers, and policymakers, contributing to a deeper understanding of the patient experience. An editorial published by MedPage Today recognized the study as “high-impact,” demonstrating the power of validated patient-reported data to influence the future of PKD care and treatment.

As we look ahead to 2025, we’re committed to expanding the Registry’s reach by growing participation, linking more health records, and producing more studies that drive meaningful progress toward better outcomes and ultimately, a cure.

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Over 3,200 participants and 237 linked electronic health records from more than 100 clinics

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“I participate in the Registry because the better researchers and physicians understand this disease, the closer we will get to improving outcomes for PKD patients. To do that, data is the key and there is no better source to tap into than real PKD patients like you and me.”

- Paul, ADPKD Registry Participant

“Although the Registry has always provided valuable insights into how patients are impacted by the disease, it now provides more insights into your journey and the aggregate of others. The data I provide remains secure but is used to help everyone better understand the challenges and opportunities at different disease stages.”

- Jeff, ADPKD Registry Participant 2024 IMPACT REPORT

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CENTERS OF EXCELLENCE

No matter where someone is in their PKD journey, the level of care they receive is critical to managing their health and achieving the best possible outcomes. Since 2022, the PKD Foundation’s Centers of Excellence (COE) program has recognized healthcare institutions that provide expert, patient-centered services supported by dedicated navigation teams.

Every COE undergoes a thorough review by the COE Advisory Panel, which includes both clinicians and patients.

In 2024, this process led to a 30% expansion of the COE network, with the designation of three new COEs, 14 new Partner Clinics, four new Pediatric Clinics, and—for the first time—four Pediatric COEs. These new additions mark an important milestone in expanding specialized care and advancing our mission to improve the lives of those affected by PKD. With the increase in COE program designations came exciting results in the number of patients who received specialized, comprehensive care in our network. In 2024, our COE program served 15,600 patients, a 23% increase over 2023, highlighting its vital role in expanding access to comprehensive care.

Beyond delivering high-quality, coordinated care, COEs play a key role in shaping the future of PKD treatment.

Each center supports the ADPKD Registry, with many also hosting clinical studies to advance treatments and ultimately find a cure.

In 2024, the Foundation invested $870,000 in 14 Care Team Grants to support patient navigation services at clinics in the COE network. The grants supported community events like informational sessions about the latest PKD research, health and wellness classes, and outreach to underserved PKD communities.

The Second Annual PKD Foundation Center of Excellence Conference hosted 120 attendees in-person and virtually.

COE network clinicians and patient navigators from 46 clinics around the country came together for a weekend of education, connection, and collaboration.

Twenty-two speakers participated in seven sessions, highlighting everything from clinic best practices to research advancements in dietary interventions.

We look forward to advancing the COE program in 2025, expanding support for patients and families nationwide.

Alongside our partners, clinicians, and community, we are transforming how PKD is managed and paving the way for better outcomes, greater hope, and a future free from this disease.

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CENTERS OF EXCELLENCE NETWORK MAP CENTERS OF EXCELLENCE: KEY: BETH ISRAEL DEACONESS MEDICAL CENTER CLEVELAND CLINIC FOUNDATION, DEPARTMENT OF KIDNEY MEDICINE COLUMBIA UNIVERSITY MEDICAL CENTER DALLAS NEPHROLOGY ASSOCIATES EMORY UNIVERSITY HOSPITAL GEISINGER CLINIC INDIANA UNIVERSITY SCHOOL OF MEDICINE MAYO CLINIC (ARIZONA) MAYO CLINIC (JACKSONVILLE) MAYO CLINIC (ROCHESTER) MEDICAL UNIVERSITY OF SOUTH CAROLINA NEPHROLOGY ASSOCIATES OF TIDEWATER SSM SAINT LOUIS UNIVERSITY HOSPITAL ST. LUKE’S CLINIC - KIDNEY AND HYPERTENSION SWEDISH MEDICAL CENTER THE KIDNEY INSTITUTE HOUSTON TX THE ROGOSIN INSTITUTE THOMAS JEFFERSON UNIVERSITY HOSPITAL TUFTS MEDICAL CENTER UNIVERSITY OF ALABAMA AT BIRMINGHAM UNIVERSITY OF CALIFORNIA LOS ANGELES UNIVERSITY OF CALIFORNIA SAN DIEGO UNIVERSITY OF CALIFORNIA SAN FRANSISCO UNIVERSITY OF CHICAGO UNIVERSITY OF COLORADO ANSCHUTZ MEDICAL CAMPUS UNIVERSITY OF IOWA UNIVERSITY OF KANSAS HEALTH SYSTEM UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE UNIVERSITY OF MIAMI UNIVERSITY OF MICHIGAN MEDICAL CENTER UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL UNIVERSITY OF PENNSYLVANIA UNIVERSITY OF SOUTHERN CALIFORNIA KECK SCHOOL OF MEDICINE UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER UNIVERSITY OF VERMONT

NEPHROLOGY ASSOCIATES, PA (DE) NORTH CAROLINA NEPHROLOGY ASSOCIATES OCHSNER MEDICAL CENTER PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY (PINE), CARROLL PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY (PINE), JEFFERSON HILLS PEDIATRIC CENTERS OF EXCELLENCE: PARTNERS IN NEPHROLOGY KEY: AND ENDOCRINOLOGY (PINE), WASHINGTON RELIANT MEDICAL GROUP CHILDREN’S NATIONAL HOSPITAL, INHERITED AND POLYCYSTIC KIDNEY DISEASES PROGRAM RENAL ASSOCIATES OF BATON ROUGE, LLC ROCKFORD NEPHROLOGY ASSOCIATES CLEVELAND CLINIC CHILDREN’S SOUTH TEXAS RENAL CARE GROUP MAYO CLINIC CHILDREN’S (ROCHESTER) SUNY DOWNSTATE HEALTH SCIENCES UNIVERSITY THE INHERITED KIDNEY DISEASES PROGRAM THE KIDNEY AND HYPERTENSION CENTER (KHC) AT THE CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP) THE OHIO STATE UNIVERSITY UNIVERSITY OF TEXAS HEALTH SAN ANTONIO PARTNER CLINICS: UNIVERSITY OF CALIFORNIA IRVINE KEY: UNIVERSITY OF NEW MEXICO UNIVERSITY OF OKLAHOMA BRIGHAM AND WOMEN’S HOSPITAL UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER CHI HEALTH CREIGHTON UNIVERSITY AT HOUSTON, MCGOVERN MEDICAL SCHOOL MEDICAL CENTER - BERGAN MERCY COLORADO KIDNEY CARE COLUMBIA NEPHROLOGY PEDIATRIC CLINICS: COMMONWEALTH NEPHROLOGY ASSOCIATES KEY: DALLAS RENAL GROUP EL PASO KIDNEY SPECIALISTS COMPREHENSIVE KIDNEY CARE CENTER FROEDTERT AND THE MEDICAL COLLEGE OF WISCONSIN AT RADY CHILDREN’S GEORGE WASHINGTON UNIVERSITY RILEY HOSPITAL FOR CHILDREN GREATER HARTFORD NEPHROLOGY UCSF BENIOFF CHILDREN’S HOSPITAL GUNDERSEN HEALTH SYSTEM UNIVERSITY OF MICHIGAN MEDICINE HACKENSACK UNIVERSITY (NJ) MOTT CHILDREN’S HOSPITAL LOMA LINDA UNIVERSITY HEALTH MONTEFIORE MEDICAL CENTER MOUNT SINAI HOSPITAL MUNSON HEALTHCARE KIDNEY AND HYPTERTENSION SPECIALISTS NEPHROLOGY AND HYPERTENSION SPECIALISTS (GA) NEPHROLOGY ASSOCIATES OF MOBILE, P.A. UNIVERSITY OF VIRGINIA HEALTH UNIVERSITY OF WISCONSIN MADISON VANDERBILT UNIVERSITY MEDICAL CENTER WASHINGTON UNIVERSITY SCHOOL OF MEDICINE YALE UNIVERSITY

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“The PKD Foundation Pediatric Center of Excellence designation has allowed us to receive support and resources from our institution to establish and maintain our growing pediatric PKD clinic, which has seen a large uptick in referrals since the PKD Foundation’s Pediatric COE designation was announced. Both ARPKD and ADPKD children and families have expressed appreciation for having access to providers who have expertise in their diseases, as well as the benefit of being able to have coordinated appointments with other specialists.”

- Katherine MacRae Dell, M.D., Pediatric COE Clinic Director at Cleveland Clinic Children’s 24 2024 IMPACT REPORT

30% growth in the program in 2024

3 new COEs 14 new Partner Clinics 4 new Pediatric Clinics 4 Pediatric COEs

ADVOCACY

Improving the lives of everyone affected by PKD requires both state and federal government support. From advancing kidney-centric policies to securing research funding, we partner with community advocates, lawmakers, and other kidney health organizations to make elected officials aware of PKD and the critical policies needed to create a healthier future for those impacted by this disease.

In 2024, Virtual Advocacy Day was a tremendous success and had the highest number of participants to date. Over 100 attendees, including Advocacy Champions, members of the PKD community, and Foundation staff advocated for change in 121 meetings with members of Congress or their staff—a 10% increase in meetings and 16% increase in participation compared to the year prior.

Securing federal funding for PKD research is imperative. In addition to funding our own grants, the PKD Foundation prioritizes advocating for federal research funding to advance treatments and a cure for PKD. An important source of that funding is the Congressionally Directed Medical Research Programs (CDMRP). Through our advocacy efforts, five PKD researchers earned CDMRP grants totaling $15.66M in 2024—a 347% increase compared to 2023.

Because of the work of our dedicated advocates, members of the 118th Congress became supporters of two important pieces of legislation. Representative Shri Thanedar (D-MI) became a co-sponsor of the Living Donor Protection Act and Representative Eleanor Holmes Norton (D-DC) is co-sponsoring the Living Organ Donor Tax Credit Act. We hope to see this legislation reintroduced by the 119th Congress.

The PKD Foundation’s Advocacy Champions Network (ACN) is a pivotal part of bringing the needs of the PKD community to Capitol Hill. Comprised of 53 patients, family members, and clinicians, this dedicated group builds relationships with members of Congress to support PKD research and advance legislation to better support PKD patients and living donors.

With the help of our supporters, we’re raising awareness of PKD and continuing to advocate for policies that impact those with PKD with members of Congress.

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10% Increase in Advocacy Day Congressional Meetings in 2024

107: Advocacy Day Participants

53: Advocacy Champions

“ It was important to me to participate in Advocacy Day because I’ve seen PKD negatively impact the lives of so many people I love. Everyone in my family with PKD passed away by age 60, and I am near ESRD with a GFR of 18 at the age of 45. My son, who is 15, was diagnosed with PKD when he was an infant. Through Advocacy Day, I was able to represent my family and other families like mine who have suffered enough. By connecting with my legislators, I was able to be the voice of my community, let them know what our priorities are, and ask them for their support.”

- Shandel Atoigue, Advocacy Champion

$15.66M in 2024 PKD research funding from CDMRP

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EDUCATION

For families living with PKD and their physicians, education is a vital part of managing this disease. As we work to end PKD, the Foundation is committed to providing the PKD community with the latest, expert-driven resources to make navigating daily life easier.

Throughout the year, we created multiple handouts to help answer families’ questions about PKD, including, “When to Seek Care for a Ruptured Cyst” and “What to do When Your Child Receives a PKD Diagnosis.” Continuing our dedication to inclusive content, seven handouts were also translated to Spanish.

Attending an in-person event can be challenging for many. Through webinars, we’re able to bring education directly to those who need it. In the summer of 2023, we hosted the three-part mini webinar series, Shared Decision-Making: ADPKD. Led by Judith Maddatu, M.D., the mini webinars helped participants gain knowledge about the various treatment options for ADPKD and strategies for expressing their thoughts and preferences by actively participating in discussions with their healthcare providers.

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In the winter of 2024, we hosted the webinar “Polycystic Kidney Disease Diet: What Is Known and What Is Safe” to share the latest research on PKD and nutrition. Led by clinicians who authored a related study in the Clinical Journal of the American Society of Nephrology, the discussion focused on maintaining a healthy lifestyle with PKD. Facilitating education for healthcare providers is another important aspect of our work. Through our Centers of Excellence (COE) program, a network of elite nephrology practices and clinics recognized for their expert PKD care, physicians around the country were able to collaborate and share best practices. With topics ranging from timely transplant to partnering with dietitians, our peer-to-peer learning series offered COE members exclusive opportunities to connect and enhance patient care together.

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Next year, we’ll continue expanding our educational resources—including new formats—to connect families, friends, and clinicians with expert-driven tools to help manage PKD.

7 Patient-Facing Handouts Translated into Spanish

4 Patient-Focused Webinars

3 Peer-to-Peer Clinician Webinars

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COMMUNITY & VOLUNTEERS

Behind every step forward in the fight to end PKD stands a dedicated network of committed volunteers. These leaders give their time, heart, and energy to lift others up and strengthen the PKD community. Their leadership and partnership help raise critical funding for PKD research and resources, spread awareness, and ensure no one is alone in their PKD journey.

In 2024, volunteers dedicated over 16,000 hours to organizing Walk for PKD events, mentoring peers, leading community meetings, advocating on Capitol Hill, and supporting countless other efforts that strengthen the PKD community. They are an irreplaceable part of the PKD Foundation and this community.

We are incredibly grateful for the nearly 800 volunteers who help drive the PKD Foundation’s mission forward.

“I feel like it’s important to give back, build awareness, and educate others which is why volunteering seemed like the perfect fit for me. As someone with PKD, and who ultimately lost a parent and grandparent to PKD, it definitely resonates and hits close to home.”

- Kevin Ten Eyck, Advocacy Champion, Community Reaction Panel 2024 IMPACT REPORT 35

PKD COMMUNITIES are a place where everyone is welcome: PKD patients,

caregivers, family members, researchers, clinicians, and friends.

ATLANTA AUSTIN BALTIMORE BIRMINGHAM CENTRAL FLORIDA CENTRAL OHIO CHARLESTON CHARLOTTE CHICAGO CINCINNATI/DAYTON CONNECTICUT DELAWARE DENVER DETROIT HOUSTON HUDSON VALLEY INDIANAPOLIS IOWA JACKSONVILLE KANSAS CITY LAS VEGAS LONG ISLAND LOS ANGELES MEMPHIS MILWAUKEE NASHVILLE NATIONAL CAPITAL NEBRASKA NEW ENGLAND NEW JERSEY NEW ORLEANS

NEW YORK CITY NORTH TEXAS NORTHEAST OHIO OKLAHOMA PHILADELPHIA PHOENIX PITTSBURGH PORTLAND SACRAMENTO SALT LAKE CITY SAN ANTONIO SAN DIEGO SAN FRANCISCO SEATTLE SOUTH FLORIDA ST. LOUIS TAMPA TIDEWATER TWIN CITIES WESTERN NEW YORK

PKD FOUNDATION COMMUNITIES: Local Communities: communities based on your geographic location PKD Thrive: a virtual community for young adults with PKD PKD Parents: a virtual community for parents of children with PKD

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“Volunteering at the PKD Foundation is important to me because it allows me to contribute to a cause I deeply care about, support individuals affected by PKD like me, and make a meaningful impact in the lives of others.”

- Thais Fliatt, PKD Connect Ambassador

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“I volunteer with the hope of contributing to the discovery of a cure or effective treatment, ensuring that my son, myself, and countless others can live longer, healthier lives than my mother and aunt. I agree with Marlene Yeldell’s words, ‘Volunteering gives me a sense of power over this disease.’”

- Jennifer Mosher, PKD Connect Ambassador

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102 Community Meetings 240 Volunteer Leaders 795 Total Volunteers 16,839 Total Volunteer Hours Value of Volunteer Hours:

Nearly $540,000* *Per University of Maryland’s Do Good Institute’s value estimation.

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COMMUNITY

DEVELOPMENT

Funding polycystic kidney disease (PKD) research to drive new treatments and ultimately a cure for the disease is a primary goal of the PKD Foundation.

Events like the Walk for PKD play a critical role in making that work possible.

Since 2000, the Walk for PKD has been the largest fundraising event for PKD in the country, raising over $36M. In 2024, Walk for PKD events were held coast to coast in 29 communities (plus a virtual option). Over 450 teams, comprised of nearly 5,000 Walkers, participated in these community events. Dedicated, passionate patients, caregivers, friends, physicians, and researchers raised over $1M for PKD research.

But the Walk for PKD isn’t the only way our community unites to improve the lives of those affected by PKD. Across the country, dedicated PKD Foundation supporters hosted their own fundraisers through the PKD Foundation’s Fundraise Your Way program. From birthdays to bar mitzvahs to golf tournaments to 5K races, and a variety of other innovative ideas, these fundraisers put their creative minds to work raising more than $110,000 in 2024.

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Along with Fundraise Your Way events, there are several annual fundraisers that the community looks forward to every year. The Miami Kidney Casino Night, a night of chance and charity coordinated by Bekki and Mike Haggard raised over $275,000. Karyn and Jerry Waxman, who organized the Memphis Golf Tournament for two decades, hosted their second Sarasota Golf Tournament, raising over $134,000 for the PKD Foundation. The 20th Annual Celtic Marketing Golf Outing, hosted by Dan Hughes in St. Johnsbury, Vermont, raised more than $48,000.

To honor their son Ryan, who passed away as an infant from PKD more than 10 years ago, Kyle and Dori McGowan started the golf tournament, “Ryan’s Reason.” Held in Buffalo, New York, the McGowan’s golf tournament brings together over 150 golfers and raises over $35,000.

We’re proud to help spread PKD awareness through the Bank of America Chicago Marathon each year. Fourteen runners donned racing bibs on behalf of the PKD Foundation in 2024, raising more than $32,000 in the process. Their dedication and tenacity are a reflection of the PKD Community.

This is only a sample of the many incredible events that raised hundreds of thousands of dollars for the PKD Foundation last year—driving our work, including lifesaving research, forward. Thank you to our amazing volunteers, fundraisers, and organizers for making these events possible.

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“After our son Ryan passed away, we wanted his life to have a greater meaning and purpose. We started Ryan’s Reason to help raise funds to find a treatment and cure for polycystic kidney disease, help families who lost a child, and to honor Ryan. Over the past 10 years, it has been amazing to see treatments become available for PKD, and we hope to see a day in the near future where there is a cure.

It’s been our pleasure to honor our son Ryan with donations to the PKD Foundation, the John R. Oishei Children’s Hospital in Buffalo, and families in Western New York who have lost a child.”

- Kyle and Dori McGowan

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“Because of the community at the PKD Foundation—that so graciously opened its arms to me and my family—I felt called to do more. So, I became the Walk Ambassador for Houston. The energy at the Walk and the people you meet there is unlike any other event.”

- Sam Asmus, Houston Walk for PKD Ambassador

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Total number of Teams: 470

30 Walks (Local and virtual)

2024 WALK FOR PKD Total raised: $1M+

Total number of Walkers: 4,847

TOP WALK EVENTS *as of 12/31/24

1. San Antonio Walk for PKD: $150,441 2. Boston Walk for PKD: $89,083 3. Milwaukee Walk for PKD: $68,975 4. Twin Cities Walk for PKD: $63,570 5. New Jersey Walk for PKD: $53,689 6. St. Louis Walk for PKD: $46,160 7. Los Angeles Walk for PKD: $45,200 8. Long Island Walk for PKD: $38,143 9. Kansas City Walk for PKD: $35,263 46 2024 IMPACT REPORT

10. Philadelphia Walk for PKD: $34,797

TOP TEAMS *as of 12/31/24

1. Patti’s Partners to Find a Cure for PKD 2. Ivan’s Investors for a PKD Cure 3. WE ARE FAMILY 4. Producers 5. Repa’s Kidney Kickers 6. Mighty Medugnos 7. Springhill Strollers 8. TeamOC 9. Marilyn’s Marchers 10. Afternoon T

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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. 2024 IMPACT REPORT

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Gift period: January 2024 - December 2024 Gifts with an asterisk (*) indicate an estate gift $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 Klee and Brigid Kleber The Klingbeil Family Jamie Lloyd Anne Lehker and Sam Slaughter Navin Manglani David Robinson Robert and Linda Roth Jordan and Laura Stolper The Towey Family Barbara Tubbesing

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Shirley and David White Bruce and Nancy Winn

$100,000 to $999,999

S. Brower Living Trust* Lizbeth Douglas* Waltraut Fehrmann Trust* Tom & Jeannie Flesch Michael and Bekki Haggard The Klingbeil Family Doris Mario* and Carol Taylor* Trusts Otsuka America Pharmaceutical, Inc. Eric Thompson Helmut and Auli Ann Will Trust*

$50,000 to $99,999

William L. Bryan* Arthur Cohn Thomas S. Kaplan & Daphne Recanati Kaplan Family The Roger L. Kohn and Kay M. Gilbert Fund The Larsen Foundation Robert and Linda Roth Vertex Pharmaceuticals

$25,000 to $49,999

The Bialer Family Foundation Helen Boen Stephen and Marni Cain Ruth Coble Estate* Marcia Hindle and Family Amy and Michael Manelli Navin Manglani Regulus Therapeutics Patti and Mark Ruffin Jane and James Schwendinger Kevin and Traci Short

Spaulding Trust Jordan and Laura Stolper Harriet and Edward Tomlinson Barbara Tubbesing

$10,000 to $24,999

Michael Agostino Anonymous (4) The Vera B. Arrison Foundation Shaun Baker Battier Take Charge Foundation Catherine Blakley and Owen Harper Felipe and Eva Blanco Boknecht Family Joint Living Trust* Kenneth Brengel Joan and Fred Brengel Family Foundation Carylon, Julius, and Marcie Hemmelstein Foundation Timothy and Grace Clackson The Lori and Michael A. Cohen Charitable Fund of the Dallas Jewish Community Foundation Marilyn and Richard Cox The Dabney Family Shirish and Pratima Desai and Family Dale and Tamara Donohoe Dana and Rick Entin Edmond Fitzgerald and Jennifer Lynch George Fleck in memory of Joan Kerr Fleck Henry Folden Glenn and Beth Frommer Coleen Gee GondolaBio Charles and Kay Hallagan Trevor Harder, in memory of Maureen Harder Charles and Kathryn Hart Esther Hill Richard Hope Dr. Gwynne L. Horwits IGN Foundation

James Avery Craftsman, Inc Harold Katz Family Foundation Jeff and Colleen Kohler Andrea and Richard Kringstein Anne Lehker and Sam Slaughter Erik Linn Jamie Lloyd Gail Low-McGillen Renne Lu Mayo Clinic Jacksonville Mayo Clinic Rochester Douglas and Rebecca McCarron Lisa McElroy and Richard Blackshaw Todd Michaels Sue and Frank Millard Mississippi Polymers, Inc. MKL Foundation, Inc. Kevin and Lori O’Connor Sarah Osborn and Randolph DelFranco Russell and Sandra Peppet Meltem and Dan Priest Edith Pulscak Denis Repa Ross Foundation Joseph and Gail Skeele Tracy and Stephan St Amour and Family Dylan Sumner Kathleen Swett Norman Taffe and Julie Bennett Virginia Turba Frederick S. Upton Foundation Jeri and David Vick Karyn and Jerold Waxman David and Lynne Weinberg Family Foundation Alyson and Chris Wess

$5,000 TO $9,999 Allen Foundation Trust Dennis Alonso

Laurel Alyea Ametek Reichert Technologies Anonymous (6) Kathleen Avery Christine and John Bakalar Kathy Bizzoco Jody Blatman Liesl and David Bohan Matthew and Jacqueline Bombeck Wendy Weinstock Brown, M.D., MPH Anne Buchacek Robert and Judith Burgstahler Barbara and Nicholas Bush California Moving & Storage Association Donna Cantalupo Ken and Lisa Cashin Vicki and James Chandler Cole, Scott & Kissane, P.A. Mary and Frank Condella Kim and Kevin Conway and Family DentaQuest Natasha Diemer Jay and Elaine Dolgin David Earling and Maria Nicolo Pedro Echarte Egan Company The Falsetti Family Michelle and Gregg Fite Cristina and Scott Garberding Gayle’s Soldiers Melody and Mark Gensheimer John Mark and Bridget Gidley Scott and Christine Giles Ira and Zari Ginsburg Arza and Brian Goldstein The Greehey Family Foundation William Hardisty Gordon Hartman Family Foundation Randall Haverkamp

Patricia Hofmann Sue Immerman Lewis Jack Joanne Johnson Allen Kinkle The Kramer Foundation Leon Kyrish Jason and Ann Labuda Dale Lewis The Thalia & George Liberatos Foundation, Inc. James and Ingrid Lisle Ted and Linny Lynch Michael Mack Catherine and Michael Manning Mary, David, and Andy Martin in honor of Charles Martin Methodist Healthcare Hospital-Central Jill and Tim Miller Richard Moore Timothy Moore Ned and Michelle Neely Daryl Parks Nelson Perez Judith and Michael Perry Poly-Cam, Inc Linda Quay Richard Roth Jerry and Cathy Rulli Harold and Barbara Saul Gilda Saul Estate* Stephanie and Jim Seaborg Harold C. Sherrick Trust* Rodney and Dawn Siegmann Dorothy Sites Joe Sitzmann Myrna Socol* Geraldine Specht Ruth Ann Spinner

Lisa Tannebaum Sidney and Kathryn Taurel Foundation Barbara and Richard Thompson University Health System Annette and John White Janice Wightman Rachel Wilson LEARN MORE ABOUT WAYS TO GIVE PKDCURE.ORG 816-300-1323 DONORRELATIONS@PKDCURE.ORG

2024 IMPACT REPORT 51

CONSOLIDATED FINANCIALS

FINANCIAL HIGHLIGHTS Fiscal Year 2024 Audited Financials (7/1/23-6/30/24)

Total Revenue $11,364,016 Contributions: $8,197,200; 72.1% Contributions - Non Financial: $508,131; 4.5% Investment - Net Returns: $683,540; 6.0% Investment - Unrealized Return: $1,975,145; 17.4%

Total Expenses $10,106,648 Mission Related: $7,990,891; 79.1% Fundraising: $1,003,292; 9.9% General & Administrative: $1,112,465; 11.0%

2024 IMPACT REPORT 53

LEADERSHIP

BOARD OF DIRECTORS OFFICERS

NAVIN MANGLANI BOARD & EXECUTIVE COMMITTEE CHAIR

CHRISTOPHER WESS VICE CHAIR

STU CAPLAN TREASURER FINANCIAL OVERSIGHT & INVESTMENT COMMITTEE CHAIR

AMANDA YEN SECRETARY

DIRECTORS

FOUAD T. CHEBIB, M.D., FASN

GLENN FROMMER

MICHAEL HAGGARD

JULIE MARSHALL, GOVERNANCE COMMITTEE CHAIR

MEYEON PARK, M.D.

VISHAL PATEL, M.D.

ALIX PICCIRILLI

DEBORA PLUNKETT

SHAWNA WEBB

SCIENTIFIC ADVISORY PANEL OFFICER

VISHAL PATEL, M.D., CHAIR

MEMBERS

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

EMILIE CORNEC-LE GALL, M.D., PH.D.

NEERA DAHL, M.D.

ERUM HARTUNG, M.D.

KATHARINA HOPP, PH.D.

MAX CHRISTOPH LIEBAU, M.D.

GREGORY PAZOUR, PH.D.

FREDERIC RAHBARI-OSKOUI, M.D.

TAKAMITSU SAIGUSA, M.D.

ROBERT H. WEISS, M.D.

OWEN WOODWARD, PH.D.

ALAN YU, M.B., B.CHIR

LEADERSHIP TEAM SUSAN BUSHNELL PRESIDENT CHIEF EXECUTIVE OFFICER

CARMEN GLEASON CHIEF OPERATING OFFICER

MICHAEL NIEKAMP CHIEF FINANCIAL OFFICER

CRAIG ROBERTSON CHIEF GROWTH OFFICER

TANYA BISSEN VP OF LEADERSHIP GIVING

CHRIS CHEN, PH.D. VP OF RESEARCH PROGRAMS

KRYSTN KUCKELMAN VP OF COMMUNITY DEVELOPMENT & STRATEGIC PARTNERSHIPS

PAUL SCRIBNER VP OF COMMUNITY PROGRAMS & EDUCATION

DESIREE WHITE VP OF INTEGRATED INFORMATION SYSTEMS

2024 IMPACT REPORT 55

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