PKD Foundation 2023 Impact Report

IMPACT REPORT

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CONTENTS

ABOUT US

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RESEARCH

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REGISTRY

..................................14 - 17

................................18 - 21 CENTERS OF. .EXCELLENCE

ADVOCACY . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 2 - 2 5 EDUCATION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 6 - 2 9 .............................30 - 33 COMMUNITY. .&. . .VOLUNTEERS ................................34 - 41 COMMUNITY. .FUNDRAISING ..................................42 - 45 DONOR APPRECIATION . . . . . . .FINANCIALS . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 6 - 47 CONSOLIDATED

LEADERSHIP. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4 8 - 4 9

Dear Supporters and Partners, We are thrilled to present our 2023 Annual Impact Report, a testament to the work and progress we’ve achieved together in advancing our shared mission of funding research, advocating for patients, and building a community for all impacted by polycystic kidney disease (PKD).

For over four decades, our supporters have helped move the needle on funding progress toward a cure, understanding more than ever about PKD, and improving the lives of those living with the disease. As we reflect on the past year, we have much gratitude for the unwavering support and collaboration of our dedicated partners, volunteers, and donors. At the PKD Foundation, we recognize the power of collaboration in driving meaningful change and creating lasting impact.

This year, our partnerships were instrumental in expanding our reach, enhancing our programs, and amplifying our impact in the PKD community.

Here are just some of the 2023 highlights: • In 2023, we awarded 20% more research grants than in 2022 due to the quality of the proposed studies and the Foundation’s commitment to fund the best research.

• Our ADPKD Centers of Excellence (COE) program increased the number of people who now have access to quality, holistic ADPKD care. COE locations grew by 57% and our inaugural cohort saw 20% more patients with ADPKD than in 2022. COE partnerships also connected researchers and clinicians to accelerate PKD research and advance expertise.

• Now with over 3,000 participants, our new and improved ADPKD Registry allows patients to provide their health information so researchers can utilize data that will accelerate a cure and improve care.

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• The PKD Foundation forged a strategic relationship with the Federal Drug Administration to leverage expertise, resources, and networks for an ARPKD Externally-Led Patient-Focused Drug Development meeting. This meeting resulted in a Voice of the Patient report that will be used by researchers to ensure the patient’s lived experience is at the forefront of drug development.

• Our Walk for PKD supporters and volunteers throughout the country raised over $1.1M in funding that can directly impact PKD research and expand care.

Behind every statistic and metric in this report are countless stories of impact and transformation.

We are inspired by the resilience, courage, and compassion of the individuals and communities we serve. As we look to the future, we are committed to deepening and expanding our partnerships to tackle emerging challenges and seize new opportunities. Together, we will continue to innovate, collaborate, and advocate for people with PKD and their loved ones.

We would like to express our sincere gratitude to our partners, donors, volunteers, and supporters for their unwavering commitment to end PKD. Your generosity, dedication, and passion inspire us every day and drive us forward in our mission to create lasting change.

We are filled with optimism for the future as we continue to work together towards our shared vision of a better world for all impacted by PKD. With gratitude, Susan Bushnell Navin Manglani

SUSAN BUSHNELL PRESIDENT & CEO PKD FOUNDATION NAVIN MANGLANI BOARD & EXECUTIVE COMMITTEE CHAIR PKD FOUNDATION

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ABOUT US

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OUR MISSION WE GIVE HOPE. We fund research, advocate for patients, and build a community for all impacted by PKD. For four decades, the PKD Foundation has been the only organization in the U.S. solely dedicated to finding treatments and a cure for polycystic kidney disease (PKD). Guided by the vision of Jared J. Grantham, M.D., and Joseph H. Bruening, the Foundation has helped revolutionize the study of PKD. Since 1982, we have proudly funded nearly 750 research projects, raised over $35M through our annual Walk for PKD, leveraged more than $1 billion in government funding for PKD research, and more.

Thanks to supporters like you, the PKD Foundation has been there every step of the way for those affected by PKD. From improving the understanding of PKD, championing legislation, and establishing local support communities—together, we are creating a brighter future.

OUR VISION #ENDPKD

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ABOUT PKD There are two types of PKD. Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure. It is the fourth leading cause of kidney failure, with more than 50% of people with ADPKD developing kidney failure by age 50. Once a person has kidney failure, dialysis or a transplant are the only options.

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.

Despite one-third of patients needing a transplant or dialysis in the first 10 years, the prognosis for ARPKD has changed dramatically. It is no longer considered a fatal condition. More than 90% of children who survive the newborn period reach their 20th birthday, and 50% do not require dialysis or a transplant yet.

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Fourth leading cause of

kidney failure: ADPKD

1 in 25,000

children have ARPKD

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RESEARCH

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RESEARCH HIGHLIGHTS The PKD Foundation, established in 1982, was founded with a primary focus on research into finding a cure for polycystic kidney disease (PKD). At the Foundation’s inception, knowledge about the disease was limited. Genes causing the disease had not been identified, and only a few researchers were dedicated to PKD science.

Since then, we have continued to fund innovative research toward the path to a cure for PKD. Notably, in 2023 we awarded 20% more grants than in 2022. Each grant was chosen by our Scientific Advisory Panel, stakeholders, and ad hoc scientists.

We also funded three fellowships that acknowledge outstanding researchers. The fellowships recognize early-career scientists whose achievements and potential identify them as rising stars–the next generation of scientific leaders in PKD research.

Not only have we provided funding for PKD research over the past 41 years, but our advocates have leveraged more than $1 billion for federal research grants. The Foundation continues to advocate for the inclusion of PKD in research funding priorities with key stakeholders in the federal government.

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20% increase in grant funding Leveraged more than

$1B for federal research grants since 1982

Additionally, in 2023, we made exciting strides in the autosomal recessive polycystic kidney disease (ARPKD) drug development space. In August, we hosted the first ever Externally-Led Patient-Focused Drug Develpment Meeting focused on ARPKD which united doctors, researchers, industry partners, the Federal Drug Administration (FDA), and ARPKD families to elevate the urgent needs of the ARPKD community.

ARPKD families emphasized the struggles of living with ARPKD and how important it is to have treatments. After the meeting, a Voice of the Patient report was created to inform future FDA decisions and oversight of ARPKD drug development. This landmark report will impact the future of ARPKD treatments and, in turn, improve the lives of people with ARPKD and their families who currently have no treatment to manage the disease.

The Foundation’s financial commitment over the years has yielded positive results on a local, national, and a global level. This includes initiating funding for young investigators from around the world, supporting innovative research ideas, and providing seed funding to allow researchers worldwide to apply for larger National Institutes of Health and Department of Defense grants. Every dollar directed to PKD research represents a stride toward understanding, treating, and ultimately curing this complex condition, offering hope and relief to millions worldwide.

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RESEARCHER SPOTLIGHT Vishal Patel, M.D. Assistant Professor of Medicine, University of Texas Southwestern Medical Center Chair, Scientific Advisory Panel, PKD Foundation “As chair of the Scientific Advisory Panel (SAP) at the PKD Foundation, I am continually reminded of the pivotal role the SAP plays in guiding PKD research. Our collaborative efforts ensure that we are not only funding, but also strategically advancing studies with the most potential to make a tangible difference. Looking back at my own 2014 research, it’s clear how those foundational studies funded by the PKD Foundation directly influenced the current clinical trials of RGLS8429. By understanding the genetic underpinnings of PKD and identifying promising therapeutic targets, we paved the way for RGLS8429 to emerge as a candidate drug. Today, RGLS8429 represents a new hopeful medicine for people with PKD. It is designed to address the root causes of kidney damage in PKD, potentially slowing or even reversing disease progression. Our hope is that this drug will improve life expectancy and quality for PKD patients, making it one of the most promising advancements in our fight against this challenging disease.”

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REGISTRY

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In 2019, we launched the ADPKD Registry, the first national patient-centered registry for people with ADPKD. Four years later, the Registry has opened much needed avenues for discussion and data exchange between patients and researchers.

In July, we launched an updated version, Registry 2.0, to make the program even more valuable to patients and researchers by linking anonymized electronic health record data into a central repository. This data will be critical to the development of new therapies and a path to a cure for PKD.

Here are the new features of Registry 2.0: Link To Electronic Health Records – Initially, the Registry only had patient-reported outcomes via surveys regarding family history and how PKD impacts a patient’s life. Now, participating patients can link their electronic health records directly to the Registry. This lets researchers see updated patient labs, medications, and symptoms. Enhancing our ADPKD Registry to integrate patient-provided electronic health records helps researchers better understand ADPKD and drive new treatments.

Registry were unnecessarily time consuming. For example, the patient questionnaire now auto-populates for patients, so they do not have to complete the entire questionnaire with each Registry update.

Personal Impact Calendar – We wanted the Registry to help patients better understand their disease. In Registry 2.0, participants can answer three short questions about how the disease has affected their lives. From their answers, a personalized calendar shows their patterns of symptoms like fatigue and pain over time, which can be useful for both patients and their doctors.

Care Summary – This summary highlights information and trends such as kidney function, family history, and diet. The summary provides the patient’s background and potential conversation points with the person’s doctor.

Data Sharing Portal – We will create a data sharing portal for the Registry. After submitting a formal request, researchers will be able to log in to a portal that shows anonymous, aggregated patient data that could aid in the research process. Having all this data in one place can accelerate research in various aspects of PKD.

Improved User Experience – After hosting several forums with Registry participants, it was learned that parts of the original 2023 Impact Report

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As of December 31, 2023, over 3,000 people have participated in the Registry, and 200 people have connected their health records.

2023 was an important year in enhancing the patient and researcher Registry experience. Patients can have a more individualized profile of their disease to improve the impact of PKD, and researchers can easily view important data that will help them find a path to a cure.

Number of people in registry:

3,000

Number of health records connected: 16 2023Impact ImpactReport Report 1 2023

200

“ I participate 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 me. ” - Participant from CA “ Completing the surveys on the various topics makes me think more deeply about my PKD journey, and it gives me topics to address with my nephrologist. ” - Participant from NJ

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CENTERS OF EXCELLENCE

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Whether someone is facing a new ADPKD diagnosis or if someone has been managing the disease for years, where one goes for care matters. That is why, in November 2022, we launched our Centers of Excellence (COE) program to provide people with ADPKD-specific care through comprehensive, patient-focused services and support from patient navigation teams.

The COE program recognizes institutions for their ADPKD-focused care and for their continuous contributions to ADPKD research by generating new clinical questions and supporting enrollment in the ADPKD Registry. This holistic and patient-centered approach brings us closer to our vision to end PKD. Following a rigorous selection process by the COE Advisory Panel, which includes clinicians and patient stakeholders, we announced a 57% expansion of the Centers of Excellence program in 2023. Among those, nine healthcare institutions were recognized as new COEs, 14 institutions were deemed new Partner Clinics, and five were named Pediatric Clinics.

Care wise, our inaugural COE cohort saw a 20% increase in PKD patients who were seen in 2023. This proves that our elite designation for nephrology practices and clinics is increasing the number of ADPKD patients who can better manage their disease, improve their quality of life, and plan for the future.

Additionally, we awarded six Care Team Grants in 2023. These grants bolster institutions’ care teams, fostering patient navigation and supporting comprehensive, ADPKD-centered care.

This three-year funding highlights their commitment to raising ADPKD care standards.

An important program benefit for both the COE network of ADPKD clinicians and the ADPKD patient community is COE clinic mentorship. Through peer-to-peer education among the COEs, clinicians partner with the PKD Foundation to share important ADPKD information and research. These collaborations foster ADPKD clinic and community growth.

We are proud of the COE program’s growth and impact in 2023.

We are continuously working to expand the COE network to improve patient access and raise the standard of care for patients with ADPKD.

57% increase in COE clinics

including the first 5 Pediatric Clinics

20% increase in patients seen

from the inaugural COE cohort

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CENTERS OF EXCELLENCE & PARTNER CLINICS MAP CENTERS OF EXCELLENCE INSTITUTIONS: INCLUDE MULTIDISCIPLINARY CARE TEAMS AND PATIENT NAVIGATORS LED BY EXPERIENCED ADPKD NEPHROLOGISTS KEY: BETH ISRAEL DEACONESS MEDICAL CENTER COLUMBIA UNIVERSITY MEDICAL CENTER EMORY UNIVERSITY 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 SAINT LOUIS UNIVERSITY ST. LUKE’S CLINIC (ID) SWEDISH MEDICAL CENTER THE KIDNEY INSTITUTE (TX) THE ROGOSIN INSTITUTE THOMAS JEFFERSON UNIVERSITY 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 DENVER UNIVERSITY OF IOWA UNIVERSITY OF KANSAS MEDICAL CENTER UNIVERSITY OF MARYLAND UNIVERSITY OF MIAMI UNIVERSITY OF MICHIGAN UNIVERSITY OF NORTH CAROLINA AT CHAPEL HILL UNIVERSITY OF PENNSYLVANIA UNIVERSITY OF SOUTHERN CALIFORNIA UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER UNIVERSITY OF VERMONT UNIVERSITY OF VIRGINIA HEALTH UNIVERSITY OF WISCONSIN-MADISON VANDERBILT UNIVERSITY YALE UNIVERSITY

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PARTNER CLINICS: HAVE AT LEAST ONE EXPERIENCED ADPKD NEPHROLOGIST WHO OFFERS A DEFINED PLAN FOR PATIENTS AND FOLLOW-UP TO CONTINUALLY OPTIMIZE CLINICAL MANAGEMENT KEY: BRIGHAM AND WOMEN’S HOSPITAL COLORADO KIDNEY CARE COMMONWEALTH NEPHROLOGY ASSOCIATES (MA) DALLAS NEPHROLOGY ASSOCIATES DALLAS RENAL GROUP GEORGE WASHINGTON UNIVERSITY GUNDERSEN HEALTH SYSTEM (WI) HACKENSACK UNIVERSITY (NJ) MONTEFIORE MEDICAL CENTER MOUNT SINAI HOSPITAL NEPHROLOGY ASSOCIATES (DE) NEPHROLOGY ASSOCIATES OF MOBILE (AL) NEPHROLOGY AND HYPERTENSION SPECIALISTS (GA) NORTH CAROLINA NEPHROLOGY ASSOCIATES THE OHIO STATE UNIVERSITY PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY – CARROLL (PA) PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY – JEFFERSON HILLS (PA) PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY – WASHINGTON (PA) RELIANT MEDICAL GROUP (MA) ROCKFORD NEPHROLOGY ASSOCIATES SUNY DOWNSTATE HEALTH SCIENCES UNIVERSITY UNIVERSITY OF CALIFORNIA IRVINE UNIVERSITY OF OKLAHOMA UNIVERSITY OF TEXAS HEALTH SAN ANTONIO

PEDIATRIC CLINICS: PEDIATRIC NEPHROLOGY EXPERTS WITH PLANS TO EXPAND TO LARGER CARE TEAMS ASSOCIATED WITH ARPKD KEY: CHILDREN’S NATIONAL HOSPITAL MAYO CLINIC CHILDREN’S CENTER (ROCHESTER) CLEVELAND CLINIC CHILDREN’S HOSPITAL CHILDREN’S HOSPITAL OF PHILADELPHIA RADY CHILDREN’S KIDNEY CENTER

“The feedback from the community has been outstanding and we have even received referrals from out of state. ADPKD patients feel more comfortable seeing physician and multidisciplinary group with expertise in PKD.” -University of Colorado - Denver, PKD Foundation COE 2023 Impact Report 1

ADVOCACY

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In collaboration with PKD community advocates, members of Congress, and other kidney health organizations, we work to further legislation, inform government regulations, and secure essential federal funding opportunities to improve the lives of everyone in the PKD community.

The Securing the U.S. Organ Procurement and Transplantation Network Act is just one of many pieces of legislation the PKD Foundation has endorsed. On September 22, 2023, the bill was signed into law. Through this law, the Organ Procurement and Transplantation Network (OPTN) can be improved and modernized, making it possible for more patients to be connected with available organs.

In our pursuit of furthering legislation and securing federal research funding, the Advocacy Champions Network (ACN) plays an important role. This dedicated group of 61 patients, family members, and clinicians works to build relationships with members of Congress to advance legislation supporting PKD research, treatments, and care. Thanks to their leadership in last year’s Advocacy Day, 110 meetings took place with members of Congress or their staff.

To recognize outstanding advocacy work, last year’s ACN awards ceremony honored Michelle Hoffmann and Greg Mainolfi.

Michelle earned the ACN Champion of the Year award for her active involvement in Congress, media outreach, and participation in crucial PKD events. Greg received the Needle Mover Award for his exceptional commitment to advancing PKD legislation and unwavering advocacy.

Alongside our ACN awardees, two members of Congress received awards in 2023 for their invaluable support. Representatives Joe Wilson (R-SC-02) and Jerry Nadler (D-NY-12) were honored for their leadership in introducing the Living Organ Donor Tax Credit Act. Rep. Nadler has been a lead sponsor of the Living Donor Protection Act, and Rep. Wilson has been instrumental in advancing legislation for the congressional kidney caucus.

With the help of our supporters, our efforts to raise awareness of PKD and the needs of its community continue to drive change.

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61: Advocacy Champions 92: Advocacy Day Participants 110: Congressional Meetings on Advocacy Day More than $1B: Government funding leveraged for PKD research since 1982

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EDUCATION

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All PKD patients, families, and caregivers should have the tools and resources necessary to manage PKD. As the leader in PKD, we designed educational events to ensure PKD education was accessible and impactful for those in need.

series created opportunities for COE members to connect and improve ADPKD care for patients.

Throughout the year, we hosted eight webinars on various topics such as collaborating with your provider and available treatment options. With only an internet connection needed, these webinars eliminated geographic barriers and provided interactive learning experiences.

Through our partnership with the International Society of Nephrology (ISN), we collaborated on the webinar, “Equity in ADPKD: Bridging Gaps for Better Patient Outcomes.” Our collaboration drew an audience from 10 countries. ISN continued this topic on their podcast, Global Kidney Care, which included PKD Foundation Outreach Ambassador Funke Ojuri as a participant.

From patients and caregivers to researchers and physicians, the PKD Connect Conference provided education, research updates, resources, and networking opportunities to 1,000 members of the PKD community, both in person and virtually.

With accessibility a top priority, all 20 educational sessions were also livestreamed.

With our partners at Medscape, we established our first continuing medical education (CME) course—Genetic Testing in PKD: A Multi-Specialty Discussion. Nearly 300 nephrologists and more than 500 primary care physicians have participated. This is an important step in helping physicians understand the role of genetic testing in ADPKD.

The inaugural Center of Excellence (COE) Conference welcomed COE network nephrologists and patient navigators nationwide. Through nine sessions, speakers shared their expertise with peers and patient stakeholders, discussing everything from care standards to clinical trials.

Building on the annual conference, members of the COE network were invited to participate in exclusive peer-to-peer education. Rotating topics and presenters, each learning 2023 Impact Report

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8

Webinars

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Conferences

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Educational Facebook Live 28 2023 Impact Report

2023 PKDCON: nearly 750 attendees from 42 countries in-person & virtually

1st PKD Foundation & Medscape Continuing Medical Education (CME) Activity: 295 nephrologists and 518 primary care

physicians participated

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COMMUNITY & VOLUNTEERS

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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 on your geographical location PKD Thrive: a virtual community for young adults with PKD PKD Parents: a virtual community for parents of children with ARPKD and ADPKD

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

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“ Volunteering for the PKD Foundation is important to me because I love to help others understand and be empowered about their disease. I have been in healthcare my entire career, so I have a unique perspective as a patient and a professional. Anything I can do to help advance the awareness of this disease and the health of patients is where I want to be! ” - Lynette Menke, PKD Connect Ambassador

Volunteers are an essential part of the PKD Foundation. Their time and dedication strengthen our communities, increase awareness of PKD, and help increase research funding through advocacy and fundraising efforts. Through more than 17,000 hours in 2023, volunteers led community meetings, advocated for change on Capitol Hill, organized Walk for PKD events, served as peer mentors, and more.

Thank you to the nearly 800 volunteers for your selfless commitment to the PKD community. Our work would not be possible without you.

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Lead Volunteers:

225

Total Volunteers:

783

Volunteer hours:

17,171

Value of Volunteer Hours: Nearly

$550,000*

* Per University of Maryland’s Do Good Institute’s value estimation.

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COMMUNITY FUNDRAISING

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Every day, people from across the country are raising funds to impact the lives of people with PKD and their loved ones.

The Walk for PKD is the largest fundraising event for polycystic kidney disease (PKD), raising over $35 million since its inception in 2000. The event unites patients, families, friends, physicians, and researchers to strengthen the community for everyone impacted by PKD. In 2023, the Walk for PKD had 40 locations and more than 5,100 Walkers.

Together, they raised over $1.1 million for PKD research.

Beyond the Foundation’s annual Walk events, members of the PKD community hosted their own fundraisers through our Fundraise Your Way program. Across the country, people turned their passions into fundraisers, supporting the PKD Foundation and creating a brighter future for those with PKD.

Along with hosting events, members of the PKD community took part in physical challenges to raise money for PKD research.

Fourteen runners participated in the Chicago Marathon, raising over $34,000. The annual Angel’s Giving Back 5K and golf tournament raised $60,000. Tom McGivney and his wife, MaryAnn, conquered Mt. Kilimanjaro to honor his father and brother, collecting $6,500 in donations for the PKD Foundation.

These are just a few of the events hosted last year that raised hundreds of thousands of dollars to support the PKD Foundation’s mission. A big thank you to all of our volunteers, fundraisers, and event organizers for helping us fund life-saving PKD research.

Hosted by Bekki and Mike Haggard, the annual Miami Kidney Casino Night raised over $234,000. Karyn and Jerry Waxman hosted the 22nd Annual Memphis Golf Tournament and the inaugural Sarasota Golf Tournament. Combined, they raised more than $140,000. In his annual Celtic Golf Tournament, Dan Hughes exceeded his past tournament totals—raising over $50,000.

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Since 2000, Walk for PKD has raised over

$35M

Walk for PKD 2023 • Total dollars raised: Over $1.1M • 40 Walks • 5,131 Walkers • 486 Teams

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Top 10 Fundraising Walk for PKD Events as of 12/31/2023 1. San Antonio Walk for PKD: $150,441 2. Boston Walk for PKD: $80,759 3. Twin Cities Walk for PKD: $62,843 4. Pittsburgh Walk for PKD: $49,821 5. Milwaukee Walk for PKD: $45,922 6. New Jersey Walk for PKD: $44,434 7. Tampa Walk for PKD: $44,253 8. Los Angeles Walk for PKD: $39,083 9. St. Louis Walk for PKD: $37,475

Congratulations Walkers!

10. Houston Walk for PKD: $32,891 2023 Impact Report

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Top 10 Fundraising Walk Teams as of 12/31/2023 1. Patti’s Partners to Find a Cure for PKD 2. Ivan’s Investors for a PKD Cure 3. UT Health SA Nephrology 4. We are Family 5. TeamOC 6. Producers 7. Mighty Medugnos 8. Springhill Strollers 9. Speltzs Stompin’ Cysts

Congratulations Teams!

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10. Marilyn’s Marchers

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Fundraise Your Way 2023

“ Running throughout Chicago with our friends and family cheering us on, is an experience neither of us will ever forget.

Combining this memory with the amount of money we raised made it even better. ” - Andrew Adamsick 40 2023Impact ImpactReport Report 1 2023

When the opportunity to combine their bucket list and fundraising for PKD popped up, Andrew Adamsick and his wife, Alexis, jumped at the chance. Growing up, Andrew and his sister watched their father prepare for a kidney transplant, knowing that they, too, would need one someday. Signing up to run the Chicago Marathon in support of the PKD Foundation was the perfect chance to honor his family’s experience with PKD and create change for the PKD community.

While they were initially anxious about fundraising, the support of Andrew’s and Alexis’ friends and family blew them away. Together, they raised over $4,500 for the PKD Foundation.

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DONOR APPRECIATION

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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. Gift period: January 2023- December 2023 Gifts with an asterisk (*) indicate an estate gift

Name Name The following individuals/families are Name Name currently making transformational gifts Name Name to our organization through a Name Name pledge commitment.

Name Name Name NameBlakley & Owen Harper Catherine Name Name Jody Blatman Name Name Susan & Allen Branch Name Name Name Tom &Name Jeannie Flesch Name GlennName & Beth Frommer Name Name Gilbert Family Name Name Donald Goldstein Name Name Michael & Bekki Haggard Name Name Name Name Hammes Foundation Name Name Klee & Brigid Kleber Name Name NavinName Manglani Name The Klingbeil Family Name Name Name AnneName Lehker & Sam Slaughter Name Name Jordan & Laura Stolper Name Name The Towey Family Name Name Barbara F. Tubbesing Name Name $1,000,000+

Lizbeth Douglas* Otsuka America Pharmaceutical, Inc. Bruce & Nancy Winn

$100,000 to $999,999 Ann & Richard Collins The Klingbeil Family

$50,000 to $99,999

Inez Gozzi* The Graceffo Family Thomas S. Kaplan & Daphne Recanati Kaplan Family

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The Roger L. Kohn & Kay M. Gilbert Fund Amy & Jason Omenn Eric Thompson

$25,000 to $49,999

Steve & Rachel Anderson Rachel & Martin Bialer Arthur Cohn Glenn & Beth Frommer Hammes Foundation Marcia Hindle Amy & Michael Manelli David Omenn Gabriela Omenn Martha & Gil Omenn Reata Pharmaceuticals, Inc Patti & Mark Ruffin Spaulding Trust Alan Stern Jordan & Laura Stolper Harriet & Edward Tomlinson The Towey Family Zafiropoulo Family Foundation

$10,000 to $24,999

Michael Agostino Anonymous (3) Norma Drummond Bellemare Catherine Blakley & Owen Harper Helen Boen Joan & Fred Brengel Family Foundation Marc Brumer Carylon, Julius & Marcie Hemmelstein Foundation Michael & Leslie Cavallaro Charles Davis Shirish & Pratima Desai Dale & Tamara Donohoe Egan Company Dana & Rick Entin George Fleck Coleen Gee Victoria Wright-Gibson & Eric Gibson Gilbert Family The Shirley & Leonard Goldstein Foundation

William Andrew “Andy” Haggard Charles & Kathryn Hart David Herro & Jay Franke Esther Hill James Avery Artisan Jewelry Andrea & Richard Kringstein Renne Lu Navin Manglani Mary, David & Andy Martin in honor of Charles Martin Mayo Clinic Jacksonville Mayo Clinic Rochester Lisa McElroy & Richard Blackshaw Todd Michaels Frank & Suzanne Millard MKL Foundation, Inc. Kevin & Lori O’Connor Sarah Osborn & Randolph DelFranco Frank & Anne Palopoli Frank S. Polizzi Sr. Edith Pulscak Ross Foundation Stephanie & Jim Seaborg Kevin & Traci Short Anne Lehker & Sam Slaughter Kathleen Swett Talaris Therapeutics Virginia Turba Martha Turner Jefferson Upton Vera B. Arrison Foundation Jeri & David Vick Warren Family Foundation Karyn & Jerold Waxman Alyson & Chris Wess The Whitcomb Charitable Foundation Shirley & David White

$5,000 to $9,999

Jason Adamo, Robin Ferraro, Andrea Campoli Dennis Alonso Laurel Alyea Ametek Reichert Technologies Gerald & Frances Anderson Anonymous (6)

Kathleen Avery Christine & John Bakalar Shaun Baker Nathan & Kim Beger Kathy Bizzoco Felipe & Eva Blanco Jody Blatman Liesl & David Bohan Bright Funds Foundation Wendy Weinstock Brown, MD,MPH Russell & Ezperanza Buckhalt Robert & Judith Burgstahler Mary Helen Buttman James Carey Vicki & James Chandler Shannon Clark Katherine & Fred Cohen Michael & Lori Cohen Cole, Scott & Kissane, P.A. Mary & Frank Condella Natasha Diemer David Earling & Maria Nicolo Pedro Echarte Brent & Debbie Fredberg Sally S. French Sheila Garten & Larry Wallerstein Gayle’s Soldiers Raymond Gee Scott & Christine Giles Sarjit Gill Ira & Zari Ginsburg Leonard Glaser* Arza & Brian Goldstein Donald Goldstein The Gordon Hartman Family Foundation The Greehey Family Foundation Becca & Derek Groothuis Rich & Geraldine Heibel Dorothy A. Henry Paul & Tracee Hicks Patricia Hofmann Houdin Honarvar Lewis Jack

Shelly & Gary Kleeman Edward Klinger Michael Klug & Michele Grieshaber The Kramer Foundation Jason & Ann Labuda Dale Lewis Sue Lienhard Cheryl & John Maher Catherine & Michael Manning Methodist Hospital | Specialty & Transplant Ryan Miller & Alicia Schwartz Miller in honor of Anita Schwartz Richard Moore Matt Morgan George Nassif Family of Dr. Tinh Chau Nguyen Otto Family Advised Fund of the Princeton Area Community Foundation Dr. Robert Parker Linda Quay Eleanor Samojlowicz* Harold & Barbara Saul David M. Robinson Wesley Silva Dorothy Sites Joseph & Gail Skeele Geraldine Specht Dylan Sumner Lisa & Brian Tannebaum Sidney Taurel The Thalia & George Liberatos Foundation, Inc. Barbara & Richard Thompson Joseph Traba David Wermuth Rachel Wilson Sally Wilson The Herbert O. Wolfe Foundation Nicholas & Lynn Zerbib

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

2023 Impact Report

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CONSOLIDATED FINANCIALS

46 2023 Impact Report 1 2023 Impact Report

FINANCIAL HIGHLIGHTS

Fiscal Year 2023 Audited Financials 7/1/22 - 6/30/23

Total Revenue $11,351,239 Key: Contributions: $9,576,157; 84.4% Contributions - Non Financial: $300,112; 2.6% Investment - Net Returns: $735,670; 6.5% Investment - Unrealized Return: $739,300; 6.5%

Total Expenses $9,403,083

Key: Mission Related: $7,229,977; 76.9% Fundraising: $989,538; 10.5% General & Administrative: $1,183,568;

12.6%

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LEADERSHIP

48 2023Impact ImpactReport Report 1 2023

BOARD OF DIRECTORS

NAVIN MANGLANI BOARD & EXECUTIVE COMMITTEE CHAIR

CHRISTOPHER WESS

VICE CHAIR

KATHERINE DELL, M.D. MICHAEL HAGGARD

DEBORA PLUNKETT

SCIENTIFIC ADVISORY PANEL

STU CAPLAN

TREASURER FINANCIAL OVERSIGHT & INVESTMENT COMMITTEE

JULIE MARSHALL

GOVERNANCE COMMITTEE CHAIR

AMANDA YEN

ROBERT ROTH

SECRETARY

IMMEDIATE PAST CHAIR

MEYEON PARK, M.D.

ALIX PICCIRILLI

SHAWNA WEBB

VISHAL PATEL, M.D.

CHAIR UNIVERSITY OF TEXAS SOUTHWESTERN MEDICAL CENTER

ERUM HARTUNG, M.D.

CHILDREN’S HOSPITAL OF PHILADELPHIA

MICHAEL CAPLAN, M.D. PH.D.

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

YALE UNIVERSITY

UNIVERSITY OF BREST, FRANCE

KATHARINA HOPP, PH.D.

MAX CHRISTOPH LIEBAU, M.D.

GREGORY PAZOUR, PH.D.

UNIVERSITY HOSPITAL COLOGNE

UNIVERSITY OF MASSACHUSETTS

ROBERT H. WEISS, M.D.

OWEN WOODWARD, PH.D.

UNIVERSITY OF CALIFORNIA DAVIS, SACRAMENTO VA MEDICAL CENTER

UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE

UNIVERSITY OF COLORADO DENVER

FREDERIC RAHBARI-OSKOUI, M.D. EMORY UNIVERSITY SCHOOL OF MEDICINE

TAKAMITSU SAIGUSA, M.D. UNIVERSITY OF ALABAMA AT BIRMINGHAM

NEERA DAHL, M.D., PH.D. MAYO CLINIC

ALAN YU, M.B., B.CHIR UNIVERSITY OF KANSAS MEDICAL CENTER

EXECUTIVE LEADERSHIP

SUSAN BUSHNELL PRESIDENT, CHIEF EXECUTIVE OFFICER

LEARN MORE ABOUT EXECUTIVE LEADERSHIP AT PKDCURE.ORG/WHO-WE-ARE/

MATT BECKA MBA, DNP, R.N. CHIEF RESEARCH OFFICER

CARMEN GLEASON

CRAIG ROBERTSON

CHIEF OPERATING OFFICER

CHIEF GROWTH OFFICER

2023 Impact Report

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