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:
• 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.
• 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.
• 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.
• 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
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.
PKD is one of the most common genetic diseases
~ 12 million people have ADPKD worldwide
1 in 25,000 children have ARPKD
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.
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.
New: 10 PKD research grants and 3 research fellowships
2023 Cycle Second-Year
Funding: 10 PKD research grants and 3 fellowships
$40,000 awarded in Core Grants
“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
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.
Over 3,200 participants and 237 linked electronic health records from more than 100 clinics
“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
EXCELLENCE CENTERS OF
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.
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
UNIVERSITY OF VIRGINIA HEALTH
UNIVERSITY OF WISCONSIN MADISON
VANDERBILT UNIVERSITY MEDICAL CENTER
WASHINGTON UNIVERSITY SCHOOL OF MEDICINE
YALE UNIVERSITY
PEDIATRIC CENTERS OF EXCELLENCE:
KEY:
CHILDREN’S NATIONAL HOSPITAL, INHERITED AND POLYCYSTIC KIDNEY DISEASES PROGRAM
CLEVELAND CLINIC CHILDREN’S
MAYO CLINIC CHILDREN’S (ROCHESTER)
THE INHERITED KIDNEY DISEASES PROGRAM AT THE CHILDREN’S HOSPITAL OF PHILADELPHIA (CHOP)
PARTNER CLINICS:
KEY:
BRIGHAM AND WOMEN’S HOSPITAL
CHI HEALTH CREIGHTON UNIVERSITY
MEDICAL CENTER - BERGAN MERCY
COLORADO KIDNEY CARE
COLUMBIA NEPHROLOGY
COMMONWEALTH NEPHROLOGY ASSOCIATES
DALLAS RENAL GROUP
EL PASO KIDNEY SPECIALISTS
FROEDTERT AND THE MEDICAL COLLEGE OF WISCONSIN
GEORGE WASHINGTON UNIVERSITY
GREATER HARTFORD NEPHROLOGY
GUNDERSEN HEALTH SYSTEM
HACKENSACK UNIVERSITY (NJ)
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.
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 PARTNERS IN NEPHROLOGY AND ENDOCRINOLOGY (PINE), WASHINGTON
RELIANT MEDICAL GROUP
RENAL ASSOCIATES OF BATON ROUGE, LLC
ROCKFORD NEPHROLOGY ASSOCIATES
SOUTH TEXAS RENAL CARE GROUP
SUNY DOWNSTATE HEALTH SCIENCES UNIVERSITY THE KIDNEY AND HYPERTENSION CENTER (KHC) THE OHIO STATE UNIVERSITY
UNIVERSITY OF TEXAS HEALTH SAN ANTONIO
UNIVERSITY OF CALIFORNIA IRVINE
UNIVERSITY OF NEW MEXICO
UNIVERSITY OF OKLAHOMA
UNIVERSITY OF TEXAS HEALTH SCIENCE CENTER AT HOUSTON, MCGOVERN MEDICAL SCHOOL
PEDIATRIC CLINICS:
KEY:
COMPREHENSIVE KIDNEY CARE CENTER AT RADY CHILDREN’S RILEY HOSPITAL FOR CHILDREN
UCSF BENIOFF CHILDREN’S HOSPITAL
UNIVERSITY OF MICHIGAN MEDICINEMOTT CHILDREN’S HOSPITAL
“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
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.
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.
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.
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.
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.
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.
53: Advocacy Champions
107: Advocacy Day Participants
10% Increase in Advocacy Day Congressional Meetings in 2024
“ 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
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.
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.
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.
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
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
“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
“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
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.
DEVELOPMENT COMMUNITY
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.
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.
“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
“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
30 Walks (Local and virtual)
Total raised: $1M+
2024 WALK FOR PKD
Total number of Teams:
470
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
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
APPRECIATION DONOR
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 2024 - December 2024
Gifts with an asterisk (*) indicate an estate gift
$1,000,000+
Shirley and David White
Bruce and Nancy Winn
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
$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
FINANCIALS CONSOLIDATED
FINANCIAL HIGHLIGHTS
Fiscal Year 2024 Audited Financials
(7/1/23-6/30/24)
Total Revenue
Total Expenses
$11,364,016 $10,106,648
$8,197,200; 72.1%
LEADERSHIP
BOARD OF DIRECTORS
OFFICERS
DIRECTORS
NAVIN MANGLANI BOARD & EXECUTIVE COMMITTEE CHAIR
FOUAD T. CHEBIB, M.D., FASN
MEYEON PARK, M.D.
CHRISTOPHER WESS VICE CHAIR
GLENN FROMMER
STU CAPLAN TREASURER FINANCIAL OVERSIGHT & INVESTMENT COMMITTEE CHAIR
MICHAEL HAGGARD
AMANDA YEN SECRETARY
VISHAL PATEL, M.D.
SCIENTIFIC ADVISORY PANEL
OFFICER
MEMBERS
VISHAL PATEL, M.D., CHAIR
MICHAEL CAPLAN, M.D., PH.D.
GREGORY PAZOUR, PH.D.
EMILIE CORNEC-LE GALL, M.D., PH.D.
FREDERIC RAHBARI-OSKOUI, M.D.
LEADERSHIP TEAM
SUSAN BUSHNELL PRESIDENT CHIEF EXECUTIVE OFFICER
CARMEN GLEASON CHIEF OPERATING OFFICER
TANYA BISSEN VP OF LEADERSHIP GIVING
CHRIS CHEN, PH.D. VP OF RESEARCH PROGRAMS
ALIX PICCIRILLI
JULIE MARSHALL, GOVERNANCE COMMITTEE CHAIR
DEBORA PLUNKETT
SHAWNA WEBB
NEERA DAHL, M.D.
TAKAMITSU SAIGUSA, M.D.
ERUM HARTUNG, M.D.
KATHARINA HOPP, PH.D.
MAX CHRISTOPH LIEBAU, M.D.
ROBERT H. WEISS, M.D.
MICHAEL NIEKAMP CHIEF FINANCIAL OFFICER
KRYSTN KUCKELMAN VP OF COMMUNITY DEVELOPMENT & STRATEGIC PARTNERSHIPS
OWEN WOODWARD, PH.D.
CRAIG ROBERTSON CHIEF GROWTH OFFICER
PAUL SCRIBNER VP OF COMMUNITY PROGRAMS & EDUCATION
ALAN YU, M.B., B.CHIR
DESIREE WHITE VP OF INTEGRATED INFORMATION SYSTEMS
