This event is open to parents and caregivers of children dealing with ARPKD, advanced complications of ADPKD in young children, other cystic kidney diseases or congenital hepatic fibrosis. The conference will feature guest speakers including:
Lisa Guay-Woodford, MD, Pediatric Nephrologist and longtime advisor to the PKD Foundation
The George Washington University Children's National Medical Center, Washington, DC
Dr. Lisa M. Guay-Woodford is the Hudson Professor of Pediatrics at the Children's National Medical Center (CNMC), 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 (ARPKD). Her laboratory has identified the disease-causing genes in several mouse models of recessive polycystic kidney disease and her group participated in the identification of the human ARPKD gene as part of the ARPKD Consortium. In addition, her laboratory was the first to identify a candidate modifier gene for recessive polycystic kidney disease. Dr. Guay-Woodford has over 100 peer-reviewed publications based on research performed in her own laboratory or as a member of several national and international consortia. She has directed the NIDDK P30-funded Hepato-Renal Fibrocystic Disease Research and Translational Core Center, initially established at the University of Alabama at Birmingham in 2005, and continues to serve as co-Director since moving to CNMC in 2012. Her research program has been funded by the NIH, the Burroughs Wellcome Fund Clinical Scientist Award in Translational Research, and the Polycystic Kidney Disease Foundation. In 2009, Dr. Guay-Woodford was awarded the Lillian Jean Kaplan International Prize for Advancement in the Understanding of Polycystic Kidney Disease, given by the PKD Foundation and the International Society of Nephrology.
In addition to her investigative work, Dr. Guay-Woodford has established and serves as Director of the CNMC Inherited Renal Disorders Program. She is the Director of the Center for Translational Science, as well as Director of the Clinical and Translational Science Institute at Children's National Medical Center (CTSI-CN), which is funded by the NIH CTSA program. She has served on several editorial boards for journals in her field. She has been a permanent member and Chair of the NIH Cellular and Molecular Biology of the Kidney Study Section. She is the Past President of the Society for Pediatric Research and Councilor for the International Pediatric Nephrology Association.
Kathryn Kapoor, MSW, Social Worker
Mount Sinai Hospital, New York City
Kathryn Kapoor joined Mount Sinai in the spring of 2006. Prior to joining the Pediatric Nephrology division in the fall of 2008, Kathryn worked in adult medicine Intensive Care Units. Now in pediatrics, her population consists primarily of patients aged 0-21 with renal disease or otherwise requiring dialysis treatments. She follows these patients both inpatient and in the outpatient clinic for pre- and post-transplant kidney follow-up. In her role as a clinical social worker, Kathryn conducts psychosocial assessments prior to kidney transplantation, works to promote adherence with the population from diagnosis, throughout dialysis and following transplant, and weaves adherence-related issues into long-term clinical interventions with patients and their families. She provides supportive counseling to patients and their families coping with chronic illness and she works closely with her medical team to address a myriad of psychosocial challenges, including issues related to transitioning from pediatrics to adult care providers. Kathryn received her Master's in Social Work from Columbia University in 2003.
Mandi Pek, MS, Renal Dietician
Mount Sinai Hospital, New York City
In 1998 Mandi obtained her Bachelor's degree in Psychology from Syracuse University. From there she attended graduate school at New York University during which time she completed a dietetic internship and graduated with a Master's of Science in Food Nutrition and Dietetics: Clinical Nutrition in 2001.
Mandi works with critically ill children providing recommendations for disease specific diets, as well as providing tube and intravenous feeding Instructions. Mandi works in the outpatient clinics as well, educating and counseling patients and their families on the medical nutrition therapy necessary to meet their specific needs. The hospital's department of pediatrics honored Mandi with theAssociate of the Year award in 2006-2007 and then again in 2011-2012 for her work with the children and staff. Mandi is a guest lecturer for the Medical Nutrition Therapy class at New York University, and precepts dietetic interns in the area of pediatric nutrition. Mandi is also involved in various hospital based research studies examining the impact nutrition therapy can have on health and medical outcomes.
In 2005 Mandi passed the Board Certification Specialty Examination in Pediatric nutrition (CSP). She continues to build her knowledge in the field of pediatric nutrition by attending seminars and conferences which discuss the latest advances in this ever changing field. Mandi is a member of the American Dietetic Association, and has her New York State Certification in Dietetics-Nutrition (CDN).
Jeffrey M. Saland, MD, Associate Professor Pediatrics
Mount Sinai Hospital, New York City
Dr. Jeffrey M. Saland is an Associate Professor of Pediatrics and Chief of the Division of Pediatric Nephrology and Hypertension at the Mount Sinai School of Medicine. He received his MD from the University of New Mexico in Albuquerque, pediatric training at the Children's National Medical Center in Washington, DC, and fellowship training in pediatric nephrology from the University of Texas Southwestern Medical Center in Dallas and here at Mount Sinai.
Dr. Saland's activities include patient care, research, educational responsibilities as Director of the pediatric nephrology fellowship program. In addition to assisting with this conference at Mount Sinai, He has been involved with the PKD foundation on a prior conference here in 2006.
Lisa M. Satlin, MD, Professor & Chair Pediatrics
Mount Sinai Hospital, New York City
Dr. Lisa Satlin is Professor and Chair of the Department of Pediatrics at the Mount Sinai School of Medicine (MSSM), where she is also an Associate Director of the MD/PhD Training Program and Director of the Center for Patient Oriented Research, Training, Education and Development (CePORTED), the innovative educational arm of Mount Sinai’s Institutes for Translational Sciences, Conduits (2007-present).
Dr. Satlin received her MD degree from Columbia University College of Physicians and Surgeons, and completed a residency in Pediatrics at the Babies Hospital of Columbia University and a Pediatric Nephrology Fellowship at the Albert Einstein College of Medicine, where she stayed on in the physician-scientist track, rising in the academic ranks. In 1997, she was recruited to MSSM as Chief of the Division of Pediatric Nephrology (through-2010). At MSSM, Dr. Satlin built an internationally respected Division of Pediatric Nephrology and an ACGME-accredited Pediatric Nephrology Fellowship training program, which has attracted both physician and research trainees interested in clinical nephrology and basic research related to developmental nephrology, respectively. Her commitment to training physician-scientists is evidenced by her roles as Associate Director and then Director of the MSSM MD/PhD Training Program (2006-10), Associate Dean for Graduate Education in Translational Research (2007-10), and Director of CePORTED (2007 – present).
Lisa continues to run an active NIH-supported laboratory focused on defining the mechanisms leading to the acquisition, maintenance and regulation of ion transport in the renal collecting duct, the nephron segment responsible in the adult for the final regulation of salt and water homeostasis. She is known nationally and internationally as a leading physician-scientist. She is currently serving a second term as an Associate Editor of the American Journal of Physiology: Renal Physiology, and has served as a member of multiple study sections and grant review groups of the National Institutes of Health, American Heart Association, and the Polycystic Kidney Disease Foundation. She has held or holds leadership positions in the American Society of Pediatric Nephrology (Council, then President), American Society of Nephrology (Board of Advisors), and International Society of Pediatric Nephrology (North American Regional Secretary and now Councilor). Her research accomplishments have been recognized by her election to membership in the Society for Pediatric Research, the American Pediatric Society, and the Association of American Physicians.
Joanne Stone, MD, Obstetrics & Gynecology and Maternal & Fetal Medicine
Mount Sinai Hospital, New York City
Dr. Joanne Stone is a well-known expert in the field of Maternal-Fetal Medicine and took over as the Maternal Fetal Medicine Fellowship Director at the Mount Sinai School of Medicine in 2006. Dr. Stone completed her residency and fellowship at the Mount Sinai School of Medicine and stayed on as full time faculty. Currently, she is also the Director of Perinatal Ultrasound and Division Director of Maternal Fetal Medicine.
She has a busy consultative and clinical practice, as well as being active in teaching and research. Her areas of interest include ultrasound, fetal therapy, multifetal pregnancy reduction and prenatal diagnosis.
Dr. Stone is the co-author of the books Pregnancy for Dummies and The Pregnancy Bible with her colleague Dr. Keith Eddleman. She has been named a Castle-Connolly/New York Magazine Top Doctor and a New York Times Magazine Super Doctor for the past several years.
Frederick Suchy, MD, Pediatric Hepatologist
Children's Hospital Colorado
Dr. Suchy is interested in neonatal cholestasis, drug-induced liver disease, viral hepatitis, metabolic liver disease, liver transplantation and acute liver failure.
His research focuses on pediatric liver disease, cholestasis, mechanisms of bile formation, hepatic and intestinal bile acid and organic anion transport, molecular and developmental regulation of liver transport mechanisms, regulation of transport proteins by nuclear receptors, inborn errors of bile acid metabolism and epithelial cell polarity.
He graduated from University of Cincinnati College of Medicine and Yale University and Columbia University. He trained at Cincinnati Children's Hospital Medical Center Program (1975 to 1982).
Michele Karl, Event Co-Coordinator
Co-Leader PKD Foundation's ARPKD Chapter
Michele Karl lives in NY with her husband, three peas, and two dogs. She has been the co-coordinator of the ARPKD chapter of the Foundation for over 5 years and has walked in 7 Walk for PKD events. She works hard to advocate for her three boys, two of whom have ARPKD. When she is not with her family she works as a teacher to babies who are blind and visually impaired. She also enjoys reading, biking, and spending time with her whole family.
Julia Roberts, Event Co-Coordinator
Co-Leader PKD Foundations's ARPKD Chapter
Julia Roberts is a writer, advocate, speaker, agency owner and chief operations officer of the lives of two kids with complex medical needs, which means she's almost nearly tired all the time and also explains her caffeine addiction. An avid arts and crafts girl, she creates original altered books, sews and scrapbooks to remind me herself she's still a person outside of refilling prescriptions, fighting with insurance and reading lab results with obsession.
She's co-founder of Support for Special Needs, a social network for special needs families and has blogged regularly since 2004 at Kidneys and Eyes about her greatest reward, raising kids Gage and Quinnlin.
The conference meetings will take place at Mount Sinai Medical Center located at 1468 Madison Avenue (at 100th Street), New York, NY 10029. Mount Sinai is within walking distance of the hotel. Breakfast and lunch on Saturday and Sunday will be provided for meeting attendees.
A small fund has been set up to provide a limited number of subsidies for individuals or families who wish to attend this event but face financial challenges. For more information please contact the PKD Foundation at education@pkdcure.org.