Board of Directors

Our voluntary Board of Directors governs the PKD Foundation. Directors represent a variety of professional backgrounds. Each Director serves a three-year volunteer term. The Board of Directors meets in a central location three times a year. Members of the Board of Directors are assigned to committees that meet by teleconference at various times throughout the year.

Elected Officers

Robert Roth

board chair
Executive Committee Chair

Robert Roth is the retired Executive Vice President and Chief Financial Officer for Home Box Office Inc. (HBO), a wholly owned subsidiary of WarnerMedia. He had been at the company for 33 years, the last 15 as CFO, responsible for the financial planning, reporting, and control activities for all divisions of the network. Rob comes from a family of PKD patients including his grandmother, mother, and brother and as such, has been a strong advocate for PKD research and organ donation awareness. Rob received a kidney transplant in 2014 from his longtime college friend for which he will forever be grateful. He and his wife Linda reside in Weston, CT, and have two adult children, Jaclyn and Benjamin. Rob has an Economics degree from Stony Brook University and an MBA degree from the University of Michigan at Ann Arbor and is a Certified Public Accountant in the State of New York. He also serves on the boards of Donate Life Connecticut, a non-profit organization dedicated to raising awareness of organ donation, and the Stony Brook University Alumni Association.

Navin Manglani

vice chair
governance Committee Chair

Navin Manglani is a Professor of Technology at NYU Stern and runs a data consulting company he founded called Numberscape Consulting. He also is involved in a number of technology startups and real estate investing. Prior to teaching, Navin served as a Director at American Express. Prior to American Express, Navin ran and sold a family business in the fashion industry. Navin holds a BA in Economics from Yale University (summa cum laude) and an MBA from Columbia Business School where he was inducted into the Beta Gamma Sigma honors society. Navin’s family has been contributing to the PKD organization for over a decade. In addition to being a PKD patient, PKD affects multiple of his extended family members. After a successful transplant, Navin’s uncle, whom Navin was very close to, died of a brain aneurysm (complication of PKD) at the age of 78. When he’s not taking advantage of the theater and unique dining experiences that his native city of New York has to offer, Navin enjoys playing the cello, piano and saxophone.

Amy Omenn

Secretary

Amy Omenn is a health & wellness coach and the owner of Bloom Kundalini Yoga, where she teaches breathwork, meditation and yoga asana. She has been an active and involved supporter of the PKD Foundation for over 19 years in various roles such as: local chapter coordinator, Chair of the Seattle Walk for PKD in 2003, and traveled to Washington, D. C. to advocate on behalf of PKD patients. Amy’s family has experienced much loss due to PKD and she too is a PKD patient. Therefore, funding PKD research to find a cure is her top priority. Amy lives in Seattle, WA with her husband, Jason and their three children, Jacob, Larkin, and Emma. It is Amy’s hope that future generations won’t have to experience the affects of PKD. 

Christopher Wess

treasurer
financial oversight & investment Committee Chair

Chris Wess is a finance leader at Merck and Company. He has nearly 20 years of experience in the pharmaceutical industry and has had responsibilities in R&D and manufacturing supporting strategic initiatives, mergers and acquisitions, capital investment, and corporate planning & reporting. Before he moved to the pharmaceutical industry, Chris worked in finance and analytics in the media industry for both Dow Jones and Nielsen Media Research. He is a Chartered Financial Analyst with an MBA from the NYU Stern School of Business and a BA in English from McDaniel College. Chris lives in Skillman, NJ with his wife Alyson and two daughters, Ellie and Georgia.

Beverly Benson, Ph.D.

Immediate past Chair

Dr. Beverly Benson lives in San Francisco where she works as a Clinical Scientist in immuno­ oncology drug development. She received a Ph.D. in Pharmacology & Toxicology from the University of Kansas and did her post-doctoral work at the Huntsman Cancer Institute. She has more than 30 years of academic and biotech research experience. For the past 20 years Dr. Benson has designed and led Phase 1 through Phase 3 clinical trials for more than 15 drugs, including five drugs that have received FDA approval at companies including Amgen, Jazz Pharmaceuticals, BeiGene and CytomX Therapeutics. She also served on the Research & Development committee for A Foundation Building Strength for Nemaline Myopathy and as a Consumer Reviewer for PKD on the Department of Defense Congressionally Directed Medical Research Programs. Dr. Benson is the only member of her family who did not inherit PKD. In 2007, she donated a kidney to her mother, who was able to live another 8 years without dialysis. Due to her personal experience caring for her family members with PKD and her strong scientific background, she is dedicated to finding a cure for PKD.

Directors

Ashley Brown

Ashley Brown joined the Board of Directors in 2016. She currently resides in the Boston area and works in the micromobility industry, where she leads the government relations and lobbying efforts in the northeast. Within the local community, Ashley wears many hats. She is a proud member Alpha Kappa Alpha Sorority, Inc., and the Boston Branch of the NAACP. Ashley completed her Bachelor of Arts degree in Political Science at the University of Wisconsin-Madison. In 2015, she completed a Master of Public Administration degree at Northeastern University. At the age of nine, Ashley was diagnosed with polycystic kidney disease. This diagnosis has inspired her to get involved in the mission set forth by the PKD Foundation and to promote awareness, especially in communities of color.

Stu Caplan

Stu Caplan is currently Chief Investment Officer of Apex Financial Advisors and a Partner at AFA Real Estate Partners. He is seasoned investment professional with experience in multiple asset classes including equity, fixed income, hedge funds, and real estate. Previously, he worked for Brickell Capital Management, a multi-family investment office in Miami, Fl, where he managed several portfolios of varied instruments. He began his career with his family’s retail art supply chain based in Silver Spring, Md. Stu received his MBA from the Robert H. Smith School of Business at the University of Maryland and his BSBA in Marketing and Entrepreneurship, cum laude, from the University of Arizona. He has PKD which he inherited from his mother who received a transplant in 2018 and as a family, they’ve been involved with the PKD Foundation for over 20 years.

Katherine Dell, M.D.

Dr. Katherine Dell is Professor of Pediatrics at Case Western Reserve University and Vice Chair of Research at Cleveland Clinic Children’s. She graduated from Harvard Medical School and completed her Pediatrics and Pediatric Nephrology training at Children’s Hospital of Philadelphia (CHOP).   She has been a PKD researcher and practicing pediatric nephrologist, treating children with ARPKD and ADPKD, for over 20 years. She is a past member of the PKD Foundation Scientific Advisory (SAC) and was the 2016 recipient of the Dr. Vincent Gattone Research Award. Her major research focus is defining factors that contribute to ARPKD kidney and liver disease progression and identifying and evaluating magnetic resonance imaging (MRI) markers of disease progression, for which she has received both NIH and PKD Foundation funding.   She is an experienced clinical researcher, having participated in numerous clinical trials and studies of pediatric chronic kidney disease and hypertension. Her ultimate goal is to be able to bring novel treatments to clinical trials in children with PKD. She and her husband live in Shaker Heights, OH and have two children.

Paula Krumboltz Hutchinson

Paula Krumboltz Hutchinson is an adjunct lecturer at Rice University, co-teaching a seminar course “Critical Thinking in a Democracy.” She and her husband John, who is a chemistry professor, lived on the campus at Rice as College Magisters at two of the residential colleges for a total of twelve years, mentoring and guiding undergraduate students through their college careers. A graduate of the University of Texas at Austin with a degree in Journalism, Paula worked as a reporter and news anchor in Austin Texas and Denver Colorado for 6 years before starting law school. Paula was a commercial litigator for 21 years at Fulbright & Jaworski (now Norton Rose Fulbright) and at McDade+Fogler in Houston. The Hutchinsons’ younger daughter Emma Grace was born with ARPKD in 1988 and was under the care of the renal team at Texas Children’s Hospital until she passed away at the age of 20. Emma was the first infant successfully dialyzed from birth at TCH, and received a kidney from Paula’s mother just before her second birthday. Paula and John, their daughter Ashlyn, her husband Ryan and dozens of friends and family have been participants in the Walk for PKD in Denver, Seattle, Austin, Houston and San Antonio. Every year since Emma passed away in 2008, Emma’s sorority at Trinity University participates in the San Antonio Walk for PKD supporting “Team Emma.”

Julie Marshall

Julie lives in Connecticut where she works as the Associate Vice President of Treatment for a company that provides in home ABA services.  She received her Master’s of Education from Cambridge College where she is currently pursuing her PhD in Applied Behavior Analysis.  When Julie was pregnant with their second son, she and her husband received news that he had signs of ARPKD. This was the first time they had heard of PKD and began educating themselves on the condition. After Porter passed away from complications related to ARPKD when he was a newborn they began spreading awareness and fundraising for the PKD foundation.  Julie and her husband went on the have a third child who was also diagnosed with ARPKD.  Jameson will be turning 3 and so far has no complications related to his ARPKD diagnosis. Their oldest child does not have PKD.  Julie and her family enjoy traveling as often as they can. Julie is a distance runner and keeps busy training for longer distances between work, school, and family time. 

Michal Mrug, M.D.

Scientific Advisory panel Chair

Dr. Mrug is a Professor of Medicine in the Division of Nephrology at the University of Alabama at Birmingham (UAB) where he trains the next generation of physicians and scientists. He is recognized as one of “Top Doctors” by Castle Connolly Medical Ltd. He co-founded and co-directs the UAB PKD Clinic and oversees clinical PKD research activities at UAB since 2009. This includes the CRISP study, an NIH-funded collaborative effort between Emory University, University of Kansas, Mayo Clinic, UAB and University of Pittsburgh that has led to many seminal discoveries. He also coordinated the REPRISE clinical trial for UAB; outcomes of this study played a crucial role in the recent FDA approval of tolvaptan as the first treatment for ADPKD. Dr. Mrug’s clinical research is centered on the development of statistical models for identification of ADPKD patients that may benefit most from therapeutic interventions. His basic research is focused on the discovery of molecular pathways that modulate PKD progression. He also directs the Therapeutics Development and Screening Core, one of four cores within the UAB Hepatorenal Fibrocystic Disease Core Center. This Center is one of four NIH-funded P30 centers focused on PKD; the other three are located at University of Kansas, Mayo Clinic and University of Maryland. The mission of these centers is the development of innovative technologies to advance PKD research and to provide access to these resources to other scientists to promote PKD research in institutions where such resources are not available. The activities of the UAB Center are focused on ARPKD. Dr. Mrug serves as the Scientific Advisory Committee Chair for the PKD Foundation.

Ex-Officio Member

Andy Betts

President and Chief Executive Officer

Andy Betts has been an executive for over 15 years, with extensive experience leading health and human service institutions, managing development, marketing, board relations and volunteer functions for non-profit organizations in the United States and Europe. Betts comes to the Foundation from The Salvation Army, where he was the Executive Director of Development for one of the largest divisions in the US, raising over $50 million annually. He has also held leadership roles for Outreach International in Kansas City, MO, and UCB broadcasting in England. Betts is accustomed to growing existing and new revenue stream while eliminating deficits at every organization he has led. As a volunteer, Andy served as Board Chair and fundraiser for Camp Quality U.K., a British national cancer charity, and volunteers for Autism Speaks.

Betts has a Bachelor of Arts in marketing and management from Coventry University, England, and post-graduate training in strategic management from Harvard Business School and the University of Indiana, Purdue University.

Emeritus

Orme Lewis Jr. Phoenix, Ariz. Managing Director, Select Investments Vice Chair, Arizona Biomedical Research Commission

Page last reviewed June 2021

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