From just a couple staff members and a doctor with a vision, we have grown to be the largest PKD patient advocacy organization in the world. Located in Kansas City, we are run by a dedicated staff proud to be the voice for the millions of people impacted by polycystic kidney disease.
Chief Executive officer
Susan is a seasoned executive with more than 25 years of experience leading strategic initiatives and programs at national, regional and local levels for nonprofit organizations. She has an extensive track record as a leader focused on building and empowering high-performing teams with an ability to synthesize the cross-departmental needs of organizations for mission funding, galvanizing supporters, and growing revenue. Prior to joining the PKD Foundation, Susan served as the vice president of development operations at JDRF International, overseeing revenue growth and resource development across core fundraising programs. In addition to JDRF International, she has also served in various leadership roles for March of Dimes, Autism Speaks, and the American Cancer Society. Susan holds a bachelor’s degree in Media Communications from Webster University – St. Louis.
Chief Research officer
Matt comes to the PKD Foundation from Teleflex, a global provider of medical technologies. While there, he built and led a global team of healthcare professionals who were responsible for professional education, clinical research, clinical trials, post-market surveillance, and patient safety. With a background in academic and clinical nursing, Matt’s served as clinical faculty at Texas A&M University – Corpus Christi and practiced clinically at various emergency departments in South Texas.
Chief operating officer
Carmen is an executive leader with over 15 years’ experience driving operational success. As a pioneering and practical self-starter recognized for delivering excellence, she has an extensive history in building and sustaining effective internal and external relationships. Prior to PKD Foundation, Carmen served as the COO for Girl Scouts where she was recognized for her strong business judgment and customer centric focus. She is passionate about developing high performing teams through coaching and mentorship in an environment that fosters diverse thought and robust problem solving. Carmen holds a bachelor’s degree from Central Missouri State University and a master’s degree in Human Resources Management from Keller Graduate School.
Chief Growth officer
Craig is a highly experienced non-profit executive with a successful track record of fundraising, field management, and community engagement. For more than 25 years, Craig has served in several field and development leadership positions at prominent national health organizations including the Muscular Dystrophy Association, Multiple Myeloma Research Foundation, National MS Society, March of Dimes, and JDRF International. Craig recently served as the Vice President, Field Development at JDRF International where he led the US field structure that generated nearly $200M in annual revenues. Craig holds a bachelor’s degree from Niagara University in Niagara Falls, New York.
vice president of leadership giving
Tanya is a highly experienced non-profit leader with over 25 years of experience in event-based fundraising, staff and volunteer engagement, portfolio management, donor development, and major gifts. She’s served in various leadership positions at Children’s Hospital of Wisconsin Foundation, Cardinal Stritch University, and JDRF International. Most recently, she served as the executive director at JDRF Wisconsin, driving profitable, diversified, and sustainable year-over-year growth in the chapter, and raising over $27M in support of type 1 diabetes research. She holds a bachelor’s degree in business management from Cardinal Stritch University. A lifelong Wisconsinite, Tanya, along with her husband and three daughters, love supporting Wisconsin’s sports teams.
vice president of research programs
Elise is a strategic leader with a decade of experience in public health initiatives and national-level collaborative partnerships. Prior to joining the PKD Foundation, she worked in clinical research coordination for PKD-specific studies and clinical trials, as well as held an epidemiology fellowship at the NIH. She has led the launch of two novel and impactful programs in ADPKD – the patient-centered ADPKD Registry and the Centers of Excellence in ADPKD. She is passionate about including the community perspective in program strategy and design and manages multiple stakeholder groups consisting of clinicians, researchers, and patient advocates. Elise holds a bachelor’s degree from New York University and a master’s degree in Public Health from Boston University.
vice president of community development
Krystn has more than 20 years of experience building and leading national fundraising campaigns and initiatives. She has extensive experience in building partnerships that move mission priorities. Prior to joining the PKD Foundation, Krystn served as the Vice President of Event Development at the National Kidney Foundation. Krystn is passionate about strengthening and empowering communities to make a difference. Krystn holds a bachelor’s degree from San Francisco State University and a master’s degree in administration of human services from Wilmington University. She lives in Philadelphia with her husband and two teenagers and is active in her community with civic projects.
Vice President of information systems
Desiree, originally from Missouri, has worked in the nonprofit community field for over 20 years. Starting her nonprofit journey at the American Cancer Society, she quickly found her passion for helping others. She became part of the PKD Foundation team in 2004 and currently holds the VP of Information Systems position. Desiree’s main objective is to bring value to the organization and its constituents by modernizing the PKD Foundation’s infrastructure environment through Cloud migration. She earned a specialized bachelor’s degree in Business and Information Technology from the University of Missouri – Kansas City.
Page last reviewed September 2023