This special group of sessions is for teens and young adults ages 13-20 who are diagnosed with PKD. This group will enjoy age-appropriate conversations and presentations to address the concerns, frustrations, and questions about having PKD at a young age. Session topics include how to keep a positive attitude for a positive life and how to be a typical teen while staying healthy. There is also an opportunity for a special fun outing in Kansas City. Don't miss this exciting opportunity to connect with peers from across the country! Featured speaker Melissa Cadnapaphornchai, M.D. treats children with renal disorders at The Kidney Center at Children's Hospital Colorado, and has served as Director of Pediatric Research at the University of Colorado Anschutz Medical Campus Polycystic Kidney Disease Research Group since 2001. Her sessions will give the teens tools and information to help them stay positive and healthy as well as how to participate in clinical trials as youth and teens. Don't miss this opportunity to hear from Dr. Melissa and connect with teens just like you!
This group is designed for youth who have been diagnosed with ARPKD or ADPKD. However, teens that have not been diagnosed but have PKD in their family are welcome to join.
Friday, June 20
Saturday, June 21
Sunday, June 22
Transplant Nurse Coordinator, University of Nebraska Medical Center
Michaela Abbott is the Inpatient Coordinator and Case Manager for the kidney & pancreas transplant program at The Nebraska Medical Center. She began her career as a care tech working on the cardiac unit. Upon receiving her nursing degree from College of Saint Mary in Omaha, Nebraska, she transferred to the Solid Organ Transplant Unit. There, she discovered her passion for care of the transplant patient. Michaela has been very involved in the organization. Membership on the Documentation Committee and serving as a Subject Matter Expert for the recent implementation of One Chart, have given her the opportunity to be a voice for nursing at The Nebraska Medical Center.
Currently, Michaela is an active member of the Unit Based Council. She is very enthusiastic about educating her patients and peers. In addition to serving on the Interdisciplinary Patient Education Committee, she chairs one of their subcommittees, the Social Media Committee. The themes of education and involvement extend beyond the institution, to the community where she can be found volunteering at the Munroe-Meyer Institute or teaching swim lessons to beginner adults. She sits on the Board of Directors for Quiet Light, a local non-profit organization. With her excess energy, Michaela enjoys competitive swimming, volleyball, softball and all things crafty.
Wendy Brown, M.D.
Chief of Staff, Jesse Brown VA Medical Center
Dr. Brown is a nephrologist who has spent her academic career in the VA Healthcare System with previous academic appointments at St. Louis University, Meharry Medical College and Vanderbilt University Medical Center. She was appointed Chief of Staff of the VA Tennessee Valley Healthcare System (TVHS) August 24, 2003 and served in that position until October 2006, when she became Chief of Staff at the Jesse Brown VA in Chicago, Illinois. She is Professor of Medicine at Northwestern University Feinberg School of Medicine and the University of Illinois Chicago College of Medicine.
Dr. Brown is a Fellow of the American College of Physicians, a Fellow of the American Heart Association, a Fellow of the National Kidney Foundation, a past-Chairman of the National Kidney Foundation (NKF), and emeritus Chair of the NKF's KEEP (Kidney Early Evaluation Program),Co-Chair of the Continuing Education Committee and a former member of the NKF Scientific Advisory Board. She served on the Nominating Committee, the Narins Award Committee, the Policy and Public Affairs Committee and the Finance Committee of the American Society of Nephrology and is a member of the Editorial Board of the ASN publication, ASN Kidney News. She was a member of the steering committee of the National Institutes of Health's National Kidney Disease Education Program and a member of the Informatics Commission of the International Society of Nephrology. Dr. Brown was the VA Chief of Staff representative on the Steering Committee of the AAMC's Chief Medical Officers Group. She is the Chief of Staff Representative to the NAVREF (National Association of VA Research and Education Foundations) Board.
Dr. Brown has published numerous professional articles and book chapters, served on the Editorial Board of International Geriatrics and Urology, was Medical Editor of NKF Family Focus, a newspaper for dialysis patients and their families with a circulation of more than 300,000, reviews manuscripts for a number of professional journals and completed five years as Editor-in-Chief of the journal, Advances in Chronic Kidney Disease.
Dr. Brown spends her free time knitting, reading, writing poetry and enjoying her four grown children and four grandsons.
Melissa Cadnapaphornchai, M.D.
Children's Hospital of Colorado and the Departments of Pediatrics and Medicine, University of Colorado School of Medicine
Melissa A. Cadnapaphornchai, MD, graduated from the University of Michigan Medical School in 1993. Following her pediatric residency training at the University of Colorado School of Medicine (UCSOM) from 1993-1996, she completed a clinical fellowship in pediatric nephrology at the University of Virginia Medical Center in 1998, as well as a fellowship in pediatric nephrology at UCSOM in 2000. Dr. Cadnapaphornchai joined the faculty of Children's Hospital Colorado and the Departments of Pediatrics and Medicine at UCSOM in 2000.
Dr. Cadnapaphornchai treats children with renal disorders at The Kidney Center at Children's Hospital Colorado, and she has served as Director of Pediatric Research at the University of Colorado Anschutz Medical Campus Polycystic Kidney Disease Research Group since 2001.
Richard Capling, D.O.
Medical Director, DaVita Dialysis Clinic
Dr. Richard Capling is a Board-certified nephrologist and has been practicing medicine for over 15 years.
Dr. Capling earned his Doctorate of Osteopathic Medicine in 1996 from the Kirksville College of Osteopathic Medicine in Kirksville, Missouri. He completed his postdoctoral training as an intern at Horizon Health Systems in Warren, Michigan and residency at Saint Louis University Hospital in St. Louis, Missouri. Following that, he completed two years of postdoctoral research fellowship training in the Division of Nephrology at Saint Louis University Hospital. He also received his fellowship in the American College of Physicians and the American Society of Nephrology.
After the completion of his postdoctoral studies, Dr. Capling was appointed as a Major and Chief of Nephrology for the United States Air Force. Here, he received the Meritorious Service Medal. He stayed in this position for three years until deciding to pursue private practice.
Outside of practicing medicine, Dr. Capling serves as a past President and Board member for the National Kidney Foundation of Kansas and Western Missouri. He currently serves as the Medical Director of DaVita Dialysis Clinic. Dr. Capling is also a member of the American Society of Nephrology, the International Society of Nephrology, the National Kidney Foundation, the American College of Physicians, and the American Society of Diagnostic and Interventional Nephrology. He has co-authored several medical publications and serves as an expert witness in medical litigation cases.
In his free time, Dr. Capling enjoys exercising, participating in triathlons and spending time with his wife and kids.
Arlene Chapman, M.D.
Professor of Medicine in the Renal Division at Emory University School of Medicine
Assistant Director of the Renal Fellowship Training Program
Co-Principal Investigator of the Atlanta Clinical and Translational Science Institute
Program Director Clinical Research Network
Dr. Arlene Chapman holds many titles, including Professor of Medicine in the Renal Division at Emory University School of Medicine, Assistant Director of the Renal Fellowship Training Program, Co-Principal Investigator of the Atlanta Clinical and Translational Science Institute, and Program Director Clinical Research Network. She was a member of the Foundation's Scientific Advisory Committee for 10 years, serving as the Chair for two of those, and a member of the Board of Trustees.
Frank Condella, Jr.
PKD Foundation Board of Trustees Chair
Frank C. Condella, Jr. lives in Andover, Massachusetts. He is currently President, CEO and Director of Columbia Laboratories, Inc. (NASDAQ: CBRX) as well as the Non-executive Chairman of Skyepharma, PLC (LSE: SKP). Frank's career spans 35 years working in both privately and publicly held companies, all of which were involved in the life sciences industry. His experience in the pharmaceutical industry includes having worked in senior management roles for several major international companies. Frank is active with the Northeastern University Health Sciences Entrepreneurs and currently serves as Chair of the PKD Foundation's Board of Trustees. He holds a bachelor's degree in Pharmacy and an MBA from Northeastern University in Boston, Massachusetts. He is married to Mary Martin Condella and has three grown daughters.
PKD Foundation Board of Trustees
Paul Conway lives in Falls Church, Virginia. He currently serves Governor Robert McDonnell as an appointed member of both the Board of Health Professions and the Commonwealth Protection Board (homeland security) for the Commonwealth of Virginia. Paul was diagnosed with kidney disease through a high school sports physical when he was sixteen years old and spent the next thirteen years as an ESRD patient. He was placed on peritoneal dialysis in 1994 and received a kidney transplant in 1997. At the time he went on dialysis, he served as the Deputy Secretary of Health and Human Resources for the Commonwealth of Virginia and was responsible for the management of fourteen state agencies. Since his transplantation in 1997, Paul as continued to be active in health care policy and kidney issues. In 2009, Paul was elected to the Board of Directors of American Association of Kidney Patients (AAKP) and presently serves as the Vice President of AAKP, as a member of the Executive Committee and as the Co-Chair of the Public Policy Committee. Apart from his activities related to health policy and kidney disease, Paul has a record of public service including roles under four presidents and three governors. His public service positions have included Chief of Staff of the Office of Federal Personnel management, the agency responsible for the Federal Employee Health Benefit Program, as well as service as the Chief of Staff of the United States Department of Labor. In his last Federal post as the Acting Federal Coordinator and Chief of Staff for the Federal Office of Gulf Coast Rebuilding – a Presidential Executive Order agency established in the aftermath of Hurricane Katrina – Paul was responsible for the coordination of Federal disaster rebuilding policies and funding issues. Former Department of Homeland Security Secretary Michael Certoff awarded Paul the second highest civilian award from DHS, the Secretary's Silver Medal, for his efforts to advance the mission of the department and to aid the states and communities impacted by Hurricane Katrina. For his dedicated service to their citizens and rebuilding efforts within their communities, Governors Bobby Jindal of Louisiana, Haley Barbour of Mississippi, Rick Perry of Texas and Bob Riley of Alabama each named him an Honorary Citizen.
Benjamin Cowley, Jr., M.D.
Chief of Nephrology & Hypertension
John Gammill Professor in PKD, Oklahoma Health Sciences Center
Benjamin D. Cowley, Jr., M.D., is the Chief of Nephrology & Hypertension and John Gammill Professor in polycystic kidney disease at the Oklahoma Health Sciences Center. Dr. Cowley has been involved in PKD research for more than 20 years, publishing numerous articles and presenting on PKD at various conferences and events. He trained under Dr. Jared Grantham, co-founder of the PKD Foundation and distinguished physician at the University of Kansas Medical Center. He currently serves as the Vice Chair of the PKD Foundation's Board of Trustees. Dr. Cowley completed his post-graduate education in Internal Medicine, Nephrology and Biochemistry at the University of Kansas Medical Center. He received his MD degree from Baylor College of Medicine and attended undergraduate school at Rice University. Dr. Cowley has been named one of Oklahoma's "Top Doctors" by Castle Connolly Medical Ltd. for the past five years.
Patrick Dean, M.D.
Consultant and Assistant Professor of Surgery, Division of Transplantation Surgery, Mayo Clinic Rochester
Dr. Patrick Dean is a Consultant and Assistant Professor of Surgery in the Division of Transplantation Surgery at Mayo Clinic Rochester. He received his undergraduate degree from Princeton University and subsequently graduated from the University of Alabama School of Medicine in Birmingham, AL. He completed his general surgery residency and fellowship in abdominal transplantation surgery at the Mayo Clinic in Rochester, Minnesota. He was appointed to the faculty at Mayo Clinic in 2006. In addition to his clinical duties, Dr. Dean is the director of the abdominal transplantation surgery fellowship program.
Dr. Dean's clinical and research interests include kidney and pancreas transplantation, preemptive kidney transplantation, living donor kidney transplantation, transplantation for polycystic kidney disease and antibody-mediated kidney graft injury. He is a Fellow of the American College of Surgeons, as well as a member of both the American Society of Transplant Surgeons and the American Society of Transplantation. He is currently Secretary/Treasurer of the Priestley Society.
Angela Degnan, LCSW, LSCSW
Nephrology Social Worker at Children's Mercy Hospitals & Clinics
Angela Degnan is a nephrology Social Worker at Children's Mercy Hospitals and Clinics in Kansas City, Missouri. She started her medical social work career in the Emergency Department in 2003 and became a social worker in nephrology in 2009.
Angela's past experience is in child welfare, working with primarily adolescents in the foster care system. She's well versed in a variety of childhood issues, including child abuse and neglect, trauma, grief and loss, and youth transitioning out of the foster care system.
Angela actively participates in a variety of committees at the department and hospital level, including program development of transition, Quality Assurance and Improvement, research, and Camp ChiMer, a camp for children with kidney disease. In addition, she supervises MSW students and social work staff for LCSW licensure. Angela was the recipient of the New Social Worker Award through the National Kidney Foundation, Council of Nephrology Social Workers in 2011.
Angela has presented on the Children's Mercy Nephrology transition program at the local and national level, including the Heartland Kidney Network Conference in 2010, National Kidney Foundation Spring Clinical Meetings in 2011 and the Society of Transplant Social Workers Conference in 2013. She and her colleagues published an article on the division's transition program in The Journal of Nephrology Social Work, Winter 2012 Edition.
It was evident to Angela early on as a social worker in nephrology that better services were needed for patients transitioning from pediatric to adult care. Angela has a particular interest in the adolescent/young adult population and is excited about the changes that the nephrology division at Children's Mercy has made to improve transition services for their patients.
Ryan Fischer, M.D.
Pediatric Transplant Hepatologist, Children's Mercy Hospital
Assistant Professor of Pediatrics, University of Missouri - Kansas City School of Medicine
I am a board-certified Pediatric Gastroenterologist and Transplant Hepatologist at Children's Mercy Hospital in Kansas City. I have a strong interest in translational research related to liver and intestinal failure and transplantation. My background in the lab includes basic research in dendritic cell biology, antigen presentation and cell-based immunotherapy. In collaboration with Kansas University's Department of Microbiology, Immunology and Genetics, I am working to harness the potential of chimeric antigen receptors in T cells for the treatment of hepatic tumors and the modulation of liver allograft rejection. In collaboration with the Departments of Immunology and Surgery at the University of Pittsburgh Medical Center, I have been evaluating the role of IL-33 in transplantation. Clinically, I focus on the diagnosis and treatment of liver disease in children, with a great deal of time devoted to children that need or have undergone liver and/or intestinal transplantation. I have a special interest in drug-induced liver injury (DILI), and have established a collaboration with the Department of Clinical Pharmacology and Therapeutic Innovation at Children's Mercy examining the etiology and prognosis of DILI in children.
The PKD Foundation appreciates the inspiring support and loyalty of its donors with exclusive giving societies. Your philanthropic support for the PKD Foundation makes you part of a special community of donors, known as Foundation Partners, who share our dedication to the discovery of treatments and a cure for polycystic kidney disease.
We depend on the longstanding generosity of philanthropic-minded individuals, families, foundations and corporations. Our giving societies are one way for us to say "thank you" to our most committed donors whose gifts continue to make an enormous impact in the fight to end PKD.
Foundation Partners receive special updates from the CEO on the progress made possible by their support, as well as exclusive invitations to conference calls, webinars and events with PKD Foundation leadership and PKD experts (including events at the Convention).
We invite you to join the Foundation Partners in shaping the future of the PKD Foundation so that one day, no one suffers the full effects of PKD.
Learn more at: pkdcure.org/foundation-partners
1.800.PKD.CURE | firstname.lastname@example.org
Gregory Germino, M.D.
Deputy Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH)
Dr. Germino became the Deputy Director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH) in 2009. Prior to joining NIDDK, Dr. Germino was a full professor at the Johns Hopkins University where he directed the Johns Hopkins Polycystic Kidney Disease (PKD) Center and served as a consultant attending on the renal service and as a teaching attending on the general medical service. He participated in multiple university committees and was a member of several editorial boards and grant review panels for numerous institutional, NIH, foundation, and international funding organizations. In addition, he served on the Scientific Advisory Board of the Polycystic Kidney Research Foundation, was a Councilor of the American Society of Clinical Investigation, and a member of the Board of Directors of Federation of American Societies for Experimental Biology. He has received multiple awards including an NIH MERIT Award, induction into the Association of American Physicians, and the Lillian Jean Kaplan International Prize for the Advancement in the Understanding of Polycystic Kidney Disease.
He received his undergraduate degree in biology from Loyola University of Chicago and in 1983 received his medical degree from the Pritzker School of Medicine at the University of Chicago. In the same year, he began further training in internal medicine and nephrology at Yale University and stayed on as a junior faculty member for another four years. He then spent a research year at Oxford University in England. He started at the Johns Hopkins School of Medicine in 1992 and became a full professor in 2003.
He is a Senior Investigator in the Kidney Disease Branch of the NIDDK Division of Intramural Research. The main focus of his research is on the molecular basis of renal cystic disease, such as autosomal dominant polycystic kidney disease (ADPKD), one of the most common inherited disorders and cause 4-5 percent of all end stage kidney disease in the United States. Individuals with ADPKD also suffer from other complications such as hypertension, cyst infections, abdominal pain and have an increased risk of intracranial aneurysms. Present ADPKD management is focused on treating symptoms. Understanding the mechanisms of ADPDK will allow us to develop safe and effective treatments.
Jared Grantham, M.D.
PKD Foundation Co-founder
As a researcher at Kansas University Medical Center, Grantham dedicated his life to studying PKD. Grantham decided to study medicine while in the hospital with polio at age 14. After graduating from Baker University in 1958, he earned a degree from the KU School of Medicine in 1964. He then spent five years on a National Institutes of Health grant to be trained in kidney research. He started working on PKD as a KU faculty member in 1969.
Over time, Grantham, has made several key discoveries about kidneys, including that the blood-filtering organs secrete their own fluid in addition to absorbing fluid. That secretion helps lead to the cysts that cause PKD. His research laid the groundwork for a boom in kidney research at the Med Center.
Grantham also has become an advocate for PKD issues. In 1982, he co-founded the PKD Foundation with Kansas City businessman Joseph Bruening, whose wife had the disease.
Lisa Guay-Woodford, M.D.
Professor of Pediatrics and Associate Vice President for Clinical and Translational Research, The George Washington University
Director of the Center for Translational Science, Children's National Medical Center
Dr. Lisa Guay-Woodford is the Richard L. Hudson Professor of Pediatrics and the Associate Vice President for Clinical and Translational Research at The George Washington University. She also serves as Director of the Center for Translational Science at Children's National Medical Center (CNMC) and Director of the Clinical and Translational Science Institute-Children's National (CTSI-CN). She is a Pediatric Nephrologist and an internationally-recognized investigator whose research focuses on identifying clinical and genetic factors involved in the pathogenesis of inherited renal disorders, most notably autosomal recessive polycystic kidney disease.
In April 2012, she moved to CNMC from the University of Alabama at Birmingham, where she had founded and served as Director of the Inherited Renal Disorders Program at the Children's Hospital of Alabama, established the NIH P30-funded UAB HepatoRenal Fibrocystic Disease Research and Translational Core Center (HRFDCC) and was the founding Director of the UAB Center for Clinical and Translational Science. She plays an active role on the PKD Foundation's Board of Trustees.
Jackie D. Hancock, Jr., CFRE
CEO of the PKD Foundation
Jackie Hancock has extensive experience in non-profit executive management, health care delivery systems, advocacy and fundraising. He comes to the Foundation from the National Foundation for Transplants, Inc. (NFT) in Memphis, Tenn., where he was president and CEO since 2004. At the NFT he worked with medical professionals to enhance patient care, delivered patient-centered programs and services, created partnerships with pharmaceutical companies, and provided leadership and guidance to the board of directors and other stakeholders.
He has also served on the executive staff of two large hospital system foundations, and helped raise more than $300 million for a variety of charitable causes. Hancock is a frequent speaker at workshops and seminars around the country and has authored many articles on a variety of fundraising topics for various professional trade publications.
He also has many volunteer roles, including volunteering for the American Diabetes Association, and as an advisory member to the Public Interest Organizations (PIO) of the National Heart Lung Blood Institute, an extension of the National Institutes of Health (NIH) in Washington D.C. He is also on the advisory board of Donate Life Tennessee.
Hancock graduated from Park University, Parkville, Mo., with a bachelor’s degree in psychology, and earned the designation of CFRE (Certified Fund Raising Executive) from the Association of Fundraising Professionals.
Marie Hogan, M.D., Ph.D.
Associate Professor of Medicine, Nephrology, Mayo Clinic Rochester
Dr. Marie C. Hogan is a consultant in the Department of Medicine, Division of Nephrology and Hypertension at Mayo Clinic in Rochester, Minnesota. She also has joint appointments in the Department of Medical Genetics and the Division of Pediatric Nephrology at Mayo Clinic. She holds the rank of Associate Professor of Medicine, College of Medicine, Mayo Clinic. Her main clinical interests include cystic, inherited renal and glomerular diseases. Her research interests are urine proteomics, biology of urine exosomes, polycystic kidney disease and liver disease, assessment and management of kidney pain.
PKD Parents Chapter Coordinator
Michele Karl lives in NY with her husband, Matt, and her three peas, Max, Nate and Gabe. Michele became involved with the PKD Foundation eight years ago when Gabe was born and diagnosed with ARPKD, which led to a subsequent diagnosis of ARPKD in Max. Nate does not have ARPKD. Over the past eight years Michele has become involved with her local PKD chapter, participated in nine Walk for PKD events, attended many chapter meetings and education meetings, and attended five National Conventions. Michele is the co-coordinator of the National PKD in Children Chapter and is now on the Board of Trustees and the Volunteer Advisory Committee for the PKD Foundation. When Michele is not with her boys or doing something for the PKDF she works part time as a teacher for young children who are blind and visually impaired.
Kari Lusby, CFP®, AIFA®
Regional Vice President, Nationwide Financial
Kari serves as Retirement Plan Consultant for Nationwide Financial. With more than ten years of industry experience she has worked alongside a wide range of leading retirement plan professionals and plan sponsors to help employees prepare for and live in retirement.
She has served as Financial Advisor, Retirement Specialist (participant enrollment and education) and Retirement Plan Consultant and has gained a unique and well-rounded understanding of the needs of organizations and their employees.
Kari, her husband and three sons reside in Roseville, CA. Her family founded Crusade for Cures Foundation helping to find cures and advance treatment options for children facing life-threatening medical conditions. Kari and the Crusade for Cures team are fighting for a cure for polycystic kidney disease. They also enjoy running, golfing, camping and spending time with family and friends.
Gregory Mainolfi is from Towson, Maryland and is currently finishing his sophomore year at St. Mary's College of Maryland. Greg was diagnosed with PKD in utero and has shared the disease with his mother since birth. He and his parents have become heavily involved with the PKD foundation in the past few years. He plans on shadowing Dr. Feng Qian this summer to observe further research with polycystic kidney disease.
Greg is a Biology major that runs cross country and plays tennis at St Mary's. He is also involved in many clubs and organizes many events on his campus.
Baltimore Chapter Coordinator
Matt Mainolfi is the Baltimore Area Chapter Coordinator, a kidney donor, and is also on the National Convention Board. His wife, Carol has had two kidney transplants due to PKD and his son Greg also has PKD.
When Matt is not advocating for PKD, he is a Certified Mortgage Examiner for the State of Maryland.
San Francisco, California
MaryKatherine Michiels-Kibler is from San Francisco, California and is now enjoying her fist year at Sarah Lawrence College in New York. She was diagnosed with PKD at the age of thirteen and since then has participated in a PKD youth clinical trial, fund raised and advocated for finding a cure and with the help of her mother, founded the first San Francisco walk for PKD in 2009.
She loves the outdoors and to travel and has backpacked in Ecuador, Peru, Bolivia, Yosemite and Jackson Hole, Wyoming.
Clifford Miles, M.D.
Assistant Professor of Internal Medicine; Transplant Nephrologist, University of Nebraska Medical Center
Dr. Miles is an assistant professor of Internal Medicine at UNMC and a transplant nephrologist who joined the program in 2007. He received his medical degree from the University of Nebraska, and completed his residency in internal medicine at Dartmouth Hitchcock Medical Center in Lebanon, N.H. After serving an additional year as Chief Medical Resident at Dartmouth, he pursued fellowship training in nephrology and transplant nephrology at the University of Michigan Medical Center, Ann Arbor. In June 2007, Dr. Miles received a master's of science degree in clinical research and design and statistical analysis from the University of Michigan Medical Center's School of Public Health. Dr. Miles currently is the Co-Director of Kidney & Pancreas Transplantation at the Nebraska Medical Center. He is a regional representative on the UNOS Kidney Transplantation Committee, and sits on the Heartland Kidney Network's medical review board.
PKD Foundation Board of Trustees and LA Chapter Coordinator
Dwight Odland lives in Simi Valley, California. He currently is the Manager of New Business for UTAS Space Systems and has 25 years of aerospace project management. experience in Business Development, Marketing, Finance, Operations and Information Technology. Dwight is one of approximately 350 people worldwide certified at Practitioner Level for New Business Proposal Management by the Association of Proposal Management Professionals (APMP). His most recent accomplishment was winning a $134M Space Station power system contract (2011). Dwight not only serves on the PKD Foundation's Board of Trustees but he is the Los Angeles metropolitan area PKDF Chapter Coordinator. He is also a Board Member of the Boys & Girls Club of the West Valley, Canoga Park. His current position is Chair of Human Resources Committee and Member of Executive Board. Dwight earned his B.S. in Business Administration & Finance, Cum Laude from California State University, Northridge.
Transplant Recipient, Mentor and PKD Foundation Volunteer
Jill Riester was diagnosed with PKD when she was in her 20's, at that time no one in her family had ever heard of PKD and in fact continued to wonder about it until her sister was tested to donate her kidney to Jill and discovered she too has PKD. In 2003, Jill's kidneys started to fail and by 2005 she was on dialysis. The best day ever happened in November of 2005 when a dear friend donated his kidney. Now, eight years later, Jill continues to feel so good that it's hard to believe she was ever sick.
Jill spends most of her time volunteering for the PKD Foundation as the Kansas City Chapter education and support leader, a job she loves. She also helps with the K.C. Walk for PKD and the local Driving Home a Cure for PKD annual golf event.
In addition to her efforts on behalf of the PKD Foundation, Jill also volunteers for an organization called "Gift of Life" that sends transplant recipients into hospitals to mentor new transplant patients and their families. Jill fees that: "It's very rewarding to offer folks something you wish you'd had when you were experiencing the same thing."
PKD Parents Chapter Coordinator
Julia Roberts lives in Atlanta, Georgia. She is a new media master whose comfort in the social media space is matched by her passion for advocacy. She is an innovative builder of communities both physical and virtual, and is an adept communicator in both realms. Julia is a skilled writer and speaker, and above all else, she is a tireless and media savvy disability advocate. Julia owns a traditional marketing firm and writes for several publications. Julia currently serves as Chair of the PKD Foundation's Board of Trustees Governance Committee. She also serves on the parent advisory committee for Children's Healthcare of Atlanta and frequently speaks at fundraising events for the Make-A-Wish Foundation. An ARPKD diagnosis for her two children in 2001 (who both had kidney transplants at age eight) lead her to volunteering with the PKD Foundation where she has served as Atlanta Chapter and Walk Coordinators, ARPKD Coordinator and Volunteer Action Committee. Julia is married to Julian and they have two children.
Lorrie Rome, MS
PKD Foundation Chief Scientific Officer
Lorrie Rome has been named Interim Chief Scientific Officer (CSO) of the PKD Foundation. Rome has served as Director of Scientific Programs at the PKD Foundation since 2005. In that capacity, she directed the grant and fellowship operations of the Foundation in order to facilitate the growth of PKD science and to enlarge the field of PKD researchers through the development of a portfolio of research awards. Rome has worked with numerous scientific experts and developed partnerships between the Foundation and pharmaceutical and small biotech companies to work towards the development of treatments for PKD. She has been instrumental in the PKD Outcome Consortium Project and other significant research initiatives.
Prior to joining the PKD Foundation, Rome spent 30 years in kidney research, working in the laboratories of Jay Galla, M.D., at the University of Cincinnati Medical Center and Jared Grantham, M.D., at the University of Kansas Medical Center (KUMC), where she learned firsthand about PKD research. Grantham is co-founder of the Foundation. Rome was the first administrator of the KUMC Kidney Institute when it was formed in 2000.
Rome brings a great deal of expertise and experience to the CSO role and has dedicated her career to kidney research.
Transplant Recipient, Author, Mentor and PKD Foundation Phoenix Chapter Coordinator
Risa Simon is a passionate author and speaker, as well as a kidney patient mentor and coach. As the founder of The Proactive Path and the TransplantFirst Academy, her mission is to empower PKD patients to advocate for their best life possible—the life she now lives. Risa isn't just walking her talk (as a preemptive transplant recipient who circumvented dialysis)—she wrote the "how to" book on it. As the PKD Foundation's Phoenix Chapter Coordinator, Risa also serves on the Foundation's Volunteer Advisory and Convention Committees.
Theodore Steinman, M.D.
Senior Physician, Beth Israel Deaconess Medical Center and Clinical Professor of Medicine, Harvard Medical School
Dr. Steinman is a Clinical Professor of Medicine, Harvard Medical School and Senior Physician at both Beth Israel Deaconess Medical Center and Brigham and Woman's Hospital, Boston.
Leadership positions: President, Renal Physicians Association; Chairman, Scientific Advisory Committee and Board of Trustees, Polycystic Kidney Disease Foundation (PKDF); President and Chairman Region I, National Kidney Foundation (NKF). He served on: Executive Committee, Council of American Kidney Societies; Steering Committee, NIDDK National Kidney Disease Education Program; Medical Advisory Board, K/DOQI.
Dr. Steinman has been the recipient of the following awards: Leo G. Rigler Award for Academic Achievement; Alumni Fellow of the Year, Pennsylvania State University; Jared J. Grantham Distinguished Achievement Award, PKD Foundation; Stone Award for Excellence in Teaching at Harvard Medical School; NKF, Distinguished Service Award, Chairman's Award, Physician of the Year Award. NKF of New England established the Theodore I. Steinman Fellowship in Clinical Research. Listed in: Best Doctors in America (Nephrology), 1992-present; Consumer's Research: Guide to America's Top Physicians, 2004-present; Top Doctors, 2010-2013, Global Who's Who; Super Doctors in Boston, 2010, Boston Magazine; Top Doctors in America, 2011-2013, Castle and Connelly.
Research in PKD: NIH HALT PKD Study and the Tolvaptan Study. He has been the author or co-author of 165 peer-reviewed publications, 15 book chapters, 187 Proceedings and 108 abstracts.
Molly Stirek, RD, LMNT
University of Nebraska Medical Center
Molly Stirek, RD, LMNT is a Registered Dietitian at The Nebraska Medical Center. She is a graduate of the University of Nebraska at Lincoln and completed her dietetic training at St. Joseph Health Center in Kansas City, Missouri. Molly has over 15 years of clinical experience and currently works with the kidney and pancreas transplant program at The Nebraska Medical Center.
Jacob M. Taylor, MS, RD, LD
Clinical Dietitian, Children's Mercy Hospital
Ph.D. Candidate, University of Kansas Medical Center
Jacob Taylor, MS, RD, LD is a clinical dietitian at Children's Mercy Hospital and Ph.D. candidate at the University of Kansas Medical Center where he conducts research under the mentorship of emeritus professor and renowned PKD researcher Dr. Jared Grantham. He completed his undergraduate degree at the University of Tennessee in 2009 and his graduate degree at the University of Memphis in 2010 specializing in clinical nutrition. After completing his graduate degree, he traveled to Kansas City to complete his doctorate training at the University of Kansas Medical Center. Alongside Dr. Jared Grantham, Jacob has focused his research efforts on controlling dietary factors known to affect ADPKD progression with the development and implementation of the Kansas PKD diet in a clinical pilot study.
Jacob also works clinically as a pediatric nephrology dietitian at Children's Mercy Hospital where he works with children who have chronic kidney disease, kidney failure, and kidney transplants. He also conducts clinical research at Children's Mercy Hospital focusing on improving nutrition care provided to children with kidney disease and has interests in conducting research examining the effects of diet and kidney transplant function in donors and recipients. He has presented his research at various conferences including the Annual Dialysis Conference and the Federation of American Societies for Experimental Biology.
Bradley Warady, M.D.
Senior Associate Chair, Department of Pediatrics, Children's Mercy Hospitals and Clinics
Professor of Pediatrics at the University of Missouri – Kansas City School of Medicine
Bradley A. Warady, M.D. is Professor of Pediatrics at the University of Missouri - Kansas City School of Medicine; Senior Associate Chairman, Department of Pediatrics, Director, Division of Nephrology and Director of Dialysis and Transplantation at The Children's Mercy Hospital. Dr. Warady's clinical and research focus is chronic kidney disease, with a particular emphasis on peritoneal dialysis. He currently serves as Co-Principal Investigator of the International Pediatric Peritoneal Dialysis Network (IPPN) and the N.I.H.-funded Chronic Kidney Disease in Children (CKiD) Study. He is a member of the Board of Directors of the North American Pediatric Renal Trials and Collaborative Studies (NAPRTCS), Chair of the Pediatric Liaison Committee of the International Society for Peritoneal Dialysis (ISPD), as well as Treasurer and Fellowship Committee Chair of the International Pediatric Nephrology Association (IPNA). Dr. Warady served as lead author of the recently published "Consensus Guidelines for the Prevention and Treatment of Catheter-Related Infections and Peritonitis in Pediatric Patients Receiving Peritoneal Dialysis," he co-chaired the NKF workgroup which published guidelines on the Nutritional Management for Children with CKD and he was a member of the writing committees for the KDOQI Pediatric Guidelines on Bone Management and Peritoneal Dialysis Adequacy. He also co-edited the books CAPD/CCPD in Children and Pediatric Dialysis and has published more than 350 articles and book chapters.
Terry Watnick, M.D.
Associate Professor of Medicine in the Division of Nephrology, University of Maryland
Director, Baltimore PKD Research and Clinical Core Center
Dr. Terry Watnick is an Associate Professor of Medicine in the Division of Nephrology. Dr. Watnick has established an inherited renal disease clinic at the University of Maryland. She has also been an investigator in several multicenter Clinical Trials recruiting patients with ADPKD, including TEMPO. She moved to the University of Maryland School of Medicine in 2012 where she leads the Baltimore Polycystic Kidney Disease Research and Clinical Core Center. She currently serves as the SAC Chair for the PKD Foundation's Board of Trustees.
Dr. Watnick received her medical degree from The Yale School of Medicine and completed her Internal Medicine training at Yale-New Haven Hospital. She then moved to the Johns Hopkins Hospital where she received Clinical Training in Nephrology. She also completed a research fellowship that was focused on the genetics of autosomal dominant polycystic kidney disease. Dr. Watnick subsequently joined the faculty at the Johns Hopkins School of Medicine where she rose through the ranks to Associate Professor. During this time she continued to develop her clinical and research interests in Inherited Kidney Diseases.
Sally inherited PKD from her father. Her sister and brother have PKD, as does one daughter. According to family history, PKD goes back at least to a grandmother born in Norway. Sally was "in the closet" about her PKD for years since she wasn't experiencing any effects. She worked at a hospital and "I didn't want anyone to feel sorry for me." Sally retired shortly after she began to have kidney infections requiring hospitalization. Upon retirement, she began her second career as a volunteer PKD Foundation coordinator for North Texas Chapter. Now in her 60's and a having served as coordinator for 2 years, Sally is feeling the effects of PKD and recently had surgery to de-roof cysts and to relocate the ureter into the kidney. Her goal is to find and fund a treatment for PKD for future generations.
Franz Winklhofer, M.D.
University of Kansas Medical Center
Franz Winklhofer, M.D. is a transplant nephrologist at the University of Kansas Medical Center and a member of the faculty of the Kidney Institute. He is dedicated to the delivery of quality patient care to individuals suffering from kidney diseases. He treats dialysis, general nephrology, and pre/post-transplant patients and is responsible for seeing all polycystic kidney disease patients who come to the center.
Get the Most Out of Your Doctor's Time
Presented by: Terry Watnick, M.D.
How do you ensure you are making the most of the short time you have with your doctor? In this session, you will learn what kind of questions to ask to ensure you are getting all the information you need to be proactive about your health.
Nuts and Bolts of Dialysis
Presented by: Benjamin Cowley, Jr., M.D.
We all hope to avoid it, but some of us will need dialysis. Learn about dialysis options and how to prepare for dialysis.
Keeping Your New Kidney Healthy
Presented by: Michaela Abbott
Learn more about how to stay healthy in a world full of germs. This session will cover post-transplant immunosuppressive medications, travel and commonly asked questions. In addition, the presentation will focus on what to expect with post-care testing and visits.
Learn the Facts: The Basics of ARPKD and ADPKD
Presented by: Lisa Guay-Woodford, M.D.
While PKD is one of the most common genetic diseases, it is not widely understood. This session will teach you the basics of PKD and what you need to know to take care of your child.
Positive Attitude, Positive Life
Presented by: Melissa Cadnapaphornchai, M.D.
Being a teenager is hard enough, and teens with PKD can have a lot to deal with. This session will provide tips for staying healthy and positive while living life as a teenager.
Stages of Chronic Kidney Disease
Presented by: Wendy Brown, M.D.
Kidney failure occurs in stages. This session will help you identify which stage you are in, what you can expect in each stage and ways to take care of your kidneys to slow the progression of the disease.
United Network for Organ Sharing (UNOS) Update
Presented by: Clifford Miles, M.D.
Review of the trends in national data in kidney transplantation, updates on the Kidney Paired Donation Program and a discussion of changes coming to the Kidney Allocation System.
Post-Transplant Diet and Nutrition
Presented by: Molly Stirek
While a kidney transplant can offer freedom from dialysis and it's many diet restrictions, it can create new nutrition challenges. Weight control, blood glucose management and increased hydration needs are just a few. This session will teach you how to eat well and stay healthy while enjoying life with your new kidney.
How to Help Your Child Transition to Managing Their Care
Presented by: Angela Degnan, LCSW, LSCSW
As parents, you play a key role in managing your children’s medical care. As your child grows and develops, your role will change over time. This session will review the reasons why it's important to help your child gradually transition to managing their own care, explain ways to involve your child in their care at any age, and discuss tools to help with the transition process.
Get Proactive for the Cause!
Presented by: PKD Foundation Staff
There are a lot of ways for teens to get involved with the PKD Foundation and make a difference.
Exhibit Hall Open and Research Poster Presentations
The Exhibit Hall will feature PKD Foundation Research Grants Program poster presentations, with select researchers standing by for further explanation and to answer questions. It will also include sponsors, kidney organizations, a photo opportunity and a chance to share your story with the Voices of PKD. A cash bar will be available.
Exhibit Hall Open
The Exhibit Hall will feature PKD Foundation Research Grants Program poster presentations, with select researchers standing by for further explanation and to answer questions. It will also include sponsors, kidney organizations, a photo opportunity and a chance to share your story with the Voices of PKD.
Presented by: Jared Grantham, M.D. and Gregory Germino, M.D.
A celebration kickoff dinner featuring Dr. Jared Grantham, PKD Foundation Co-founder, and Dr. Gregory Germino of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the National Institutes of Health (NIH). Learn more about how far we have come, the research process and further detail about the 2014 PKD Foundation grant recipients.
Advocacy Breakfast and Foundation Update
Presented by: Jackie D. Hancock, Jr., CRFE, Frank Condella, Jr. and Paul Conway
This session will discuss our progress, partnerships and advocacy platform for moving forward.
The Latest in PKD Clinical Studies
Presented by: Marie Hogan, M.D., Ph.D.
Empowered patients are the key to accelerating the development of a robust treatment pipeline. This session will provide general information about clinical studies, which studies are currently recruiting, major studies in progress and their status, and upcoming studies you may be interested in.
What to Know About Immunosuppressive Drugs
Presented by: Franz Winklhofer, M.D.
This session will review immunosuppressive drug options, recommendations, risks and necessity.
Dialysis and Transplantation in Youth
Presented by: Bradley Warady, M.D.
Dialysis and transplantation greatly affect children's lives, and this session will cover everything you need to know as a parent for when your children reach these stages.
You Are Not Alone (Even if it Feels Like it)
Presented by: Greg Mainolfi and MaryKatherine Michiels-Kibler
Having a chronic disease as a teenager is a game changer. But you are not alone. This session allows you to talk to other teens who know what you are going through and provide tips about how to get through it.
Learn the Facts: Polycystic Liver Disease
Presented by: Marie Hogan, M.D., Ph.D.
This session will cover the basics of polycystic liver disease (PLD), including what causes it, how it affects the body and how best to manage it.
Congenital Hepatic Fibrosis
Presented by: Ryan Fischer, M.D.
What's got you worried, what's got me worried: a look at congenital hepatic fibrosis from the doctor's perspective and the parents' perspective.
Clinical Trials and Youth
Presented by: Melissa Cadnapaphornchai, M.D. and MaryKatherine Michiels-Kibler
Being a teenager isn't easy, and teens with PKD can have a lot to deal with. This session will provide tips for staying healthy and positive while living life as a teenager.
Building Your Financial House for PKD Families
Presented by: Kari M. Lusby, CFP®, AIFA®
Life managing a chronic illness for yourself or a loved one can be stressful enough. Your financial situation can provide you with a foundation of stability and confidence or can create chaos and uncertainty. Join us to learn how to build your financial house so your finances are working for you.
ADPKD Science Update
Presented by: Terry Watnick, M.D.
Learn the science of ADPKD, from the basics to issues related to having ADPKD.
Post Transplant: What You Need to Know
Presented by: Franz Winklhofer, M.D.
Living post-transplant can present a new set of challenges. This session will detail how to detect and avoid transplant-related health issues.
Q&A Session: Your ARPKD and ADPKD Questions Answered by the Experts
Presented by: Melissa Cadnapaphornchai, M.D. and Lisa Guay-Woodford, M.D.
Cystic kidney disease in children devastates families, and dramatically affects quality of life for children who have it. This session will feature experts in ADPKD and ARPKD to answer any questions you may have.
Minimize Pain, Maximize Life
Presented by: Theodore Steinman, M.D.
While chronic pain cannot be cured, pain management aims to reduce pain as much as possible so life can go on. The session will focus on what you can do to maximize relief from pain, particularly non-drug related approaches to pain control.
Day-to-Day Living with a PKD Child
Presented by: Lisa Guay-Woodford, M.D., Michele Karl and Julia Roberts
Life keeps us busy, and living with PKD increases the number of details to keep straight. This session will discuss how to juggle your child’s appointments, major decisions and medicines, while still enjoying life.
Self Care for the Caregiver
Presented by: TBA
While you take great care of others, it is also vital you take care of yourself. Learn some practical tips you can use daily.
Alternative Therapies for PKD
Presented by: Benjamin Cowley, Jr., M.D. and Terry Watnick, M.D.
Have you ever wondered if drinking more water or taking certain vitamins would affect the progression of PKD? Attend this session to ask the experts and get honest, science-based answers regarding alternative therapies for PKD.
The Connection Legacy: Be A Mentor. Find A Mentor. Stay Engaged!
Presented by: Risa Simon and Jill Riester
Transplant recipients discover the gift in helping others, while individuals seeking more insight are encouraged to tap into the success formulas of those who have walked the path before them. Whether you aspire to be a mentor, find a mentor or simply stay connected to Foundation's mission, this session offers mutual reward for all.
Presented by: Patrick Dean, M.D.
This session will walk through the transplantation process, from end-stage renal disease to living post-transplant.
We will celebrate the generosity of PKD Foundation donors with a private reception. Enjoy cocktails and hors d'oeuvres with friends, PKD Foundation leadership and PKD researchers and clinicians at this donor recognition event.
Learn about the pioneering research we are funding in 2014 and 2015 during an intimate breakfast with dynamic researchers and clinicians. Help us envision a more hopeful future for all who are touched by PKD.
From Promise to Progress: Accelerating Treatments to Patients Update Panel Discussion
Presented by: Benjamin Cowley, Jr., M.D., Terry Watnick, M.D., Arlene Chapman, M.D. and Lorrie Rome, MS
(ATP) initiative. ATP is a comprehensive, integrated research and development program that represents the core of the Foundation's work. ATP is aimed at speeding up development of treatments which could slow or stop progression of PKD, and each of the components are important and interconnected. A panel of experts will provide an overview and update about progress in the four programs:
- Drug Repurposing – Benjamin Cowley, Jr., M.D.
- Grants and Research & Development – Terry Watnick, M.D.
- Clinical Trials Awareness Program (CTAP) – Arlene Chapman, M.D.
- PKD Outcomes Consortium (PKDOC) – Lorrie Rome, MS
Nutrition and PKD: Why Diet Matters and What Parents Can Do to Help Their Kids
Presented by: Jacob M. Taylor, MS, RD, LD
This session will discuss the link between diet and PKD progression, the Kansas PKD diet study at the University of Kansas Medical Center, and practical tips that parents can use to improve their child's diet.
How to Become Your Own Advocate
Presented by: Richard Capling, D.O. and Bradley Warady, M.D.
Your parents are heavily involved in your health care on your behalf. This session will review how you can work together with them and become your own best advocate for your care.
Presented by: Michele Karl and Julia Roberts
You've been waiting to talk with other parents about PKD and your child and you want to talk to parents who understand, right? Well, now is your chance. Hear from parents who have been raising four kids with PKD and have experienced everything from financial stresses, dialysis, kidney transplants, growth issues, educational issues, emotional issues and more. They will share their experience and answer your questions.
Getting Involved in the PKD Foundation — How to Fight for the Cause!
Learn how to help find a cure by getting involved with the PKD Foundation. From the Walk for PKD to Run for PKD to social media, advocacy, clinical studies, and DIY for PKD — there's something to fit everyone's schedule! Remember — we're better together!