2014 Patient Care Conference Speakers

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Susan Maksomski, OTR/L, CHT
Occupational Therapist/Certified Hand Therapist
New York Presbyterian Hospital

Susan Maksomski has been working as an Occupational Therapist/Certified Hand Therapist at the New York Presbyterian Hospital for over 16 years. She has worked with children suffering from EB for six years in an interdisciplinary setting, as well as individually. Susan has been certified as a hand therapist for ten years specializing in upper extremity rehabilitation for adults and children. She has attended the DEBRA PCC previously and gained significant knowledge from patients and families dealing with Epidermolysis Bullosa. She also experienced working with families in the home environment dealing with the day to day struggles of patient care. Susan has been a lab instructor in splinting at Columbia University for the past thirteen years. Currently, she is enrolled in the Masters of Science in Organizational Leadership at Quinnipiac University.

Susan Maksomski


M. Peter Marinkovich, MD
Director, Blistering Disease Clinic
Stanford University School of Medicine

Dr. Marinkovich received his dermatology training at Oregon Health Sciences University, and his research training in the laboratory of Dr. Robert Burgeson, who discovered type VII collagen. Dr. Marinkovich's early work led to the characterization of several key basement membrane components involved in epidermolysis bullosa, including laminin-332 and laminin-311. He later joined the faculty at Stanford University and served as an attending in the National EB Registry at Stanford University and currently directs the Stanford Blistering Disease Clinic. Dr. Marinkovich’s NIH funded laboratory has had a longstanding focus on the development of molecular therapy for various subtypes of epidermolysis bullosa.

M. Peter Marinkovich


Skin Integrity Nurse Practitioner
Children’s Hospitals and Clinics of Minnesota

Sandra Oehlke has been the Skin Integrity nurse practitioner at Children's Hospitals and Clinics of Minnesota for the past 6 years. Prior to her position at Children's she graduated from Winona State University with her BSN in 1982 and did her clinical years in Rochester MN. She has worked as a pediatric nurse at Vanderbilt University Hospital, the U of M, and Ridgeview Medical Center in MN. She was a catastrophic case manager and transplant coordination for UHC as well as an adjunct clinical professor at the College of St. Catherine's AD program. In 2002, she received Master of Arts in Nursing at the College of St. Catherine. She then became a dermatology nurse practitioner and clinical research professional at a pediatric dermatology Clinic. When she joined Children's in 2008 she did her WOCN training at the University of Texas, M.D. Anderson Cancer Research Center (WOCNEP). Sandra is involved in several professional organizations on the regional and national level. She is married with a son and daughter in college.

Sandra Oehlke


Amy S. Paller, MD
Chair, Department of Dermatology
Northwestern University Feinberg School of Medicine

Amy Paller, MS, MD is the Walter J. Hamlin Chair and Professor of Dermatology, Professor of Pediatrics, and Principal Investigator of the NIH-funded Skin Disease Research Center at Northwestern University’s Feinberg School of Medicine. She received her undergraduate and graduate degrees from Brown University and her medical degree from Stanford University. Dr. Paller completed residency training in both Pediatrics and Dermatology at Northwestern University and her postdoctoral research fellowship at the University of North Carolina. She served as Chief of Pediatric Dermatology at Northwestern’s Children’s Hospital beginning in 1988 and became Chair of Dermatology in 2004. She has been President of the Society for Pediatric Dermatology, Society for Investigative Dermatology, and Women's Dermatologic Society. Dr. Paller is an NIH-funded investigator who has served on the NIH Board of Scientific Counselors (NIAMS). Her clinical interests focus on genetic disorders of the skin, including epidermolysis bullosa, and cutaneous immunologic disorders in children. Read More.

Amy Paller


Ellen G. Pfendner, PhD
Director, EBDx Program
GeneDx Inc. Gaithersburg MD

Ellen Pfendner received her BS from Simmons College and PhD from the University of Pennsylvania. After teaching at the University of Pennsylvania, she managed the Molecular Diagnosis Laboratory at the Hospital of the University of Pennsylvania. Dr. Pfendner has established CLIA certified molecular genetic testing laboratories at the Albert Einstein Medical Center and at Thomas Jefferson University where she developed the clinical genetic testing service with Dr. Jouni Uitto. For the last 9 years Dr. Pfendner has directed the EB genetic testing program at GeneDx. Dr. Pfendner has worked EB for 19 years and is the author of numerous scientific articles on the genetics of EB.

Ellen G. Pfendner


Jennifer Phillips, MS, RD, LD
Registered Dietitian
Cincinnati Children's Hospital Medical Center

Jennifer Phillips is a Clinical Dietitian at Cincinnati Children's Hospital Medical Center.  She has 10 years of clinical pediatric experience.  Jennifer is currently practicing in the Pediatric Intensive Care Unit and Epidermolysis Bullosa Center.  She has been an EB Center dietitian for the last 7 years. Jennifer Phillips received her Bachelor of Science and Master of Science degrees from Marshall University.



Mark P. Popenhagen, PsyD
Psychology Director
PCH Complex Chronic Pain Program
Phoenix Children's Hospital

Dr. Mark Popenhagen is a psychologist with clinical specializations in Pediatric Psychology, Pain Management, and Palliative Care.  He received his doctoral degree at the Minnesota School of Professional Psychology.  After completing his fellowship in Pediatric Psychology at St. Jude Children’s Research Hospital in Memphis, Tennessee, he continued on as their pain psychologist.  He went on to pursue further pain management and palliative care opportunities at the University of Colorado/Children’s Hospital of Denver and Loyola University Medical Center/Ronald McDonald Children’s Hospital.  He joined Phoenix Children's Hospital in 2013, and is serving as the Program Director of the Complex Chronic Pain Program.

Mark P. Popenhagen


Carol Schober-Flores, RN, BSN, CWS
Children's Hospital Colorado EB Center

Carol Schober-Flores has worked in Dermatology for 25 years and started working with patients diagnosed with EB 20 years ago. She began working with the EB population at University Hospital, but moved with Dermatology to the Children’s Hospital Colorado to maintain the continuity of care for these patients. Carol has her Bachelor’s of Science in Nursing and is a Clinical Wound Specialist, but finds that her true passion lies in working with individuals diagnosed with EB and their family members. She has assisted in the education of EB both through formal and informal lectures and with publications. Her job as a wound care nurse for these families is to assist them with education regarding their child’s skin disorder, teaching them wound care strategies, obtaining wound supplies and assisting with home care nursing support. She is also a liaison for them when questions or problems arise.

Carol Schober-Flores


Carrie Shotwell
Occupational Therapist
Cincinnati Children's Hospital Medical Center

Carrie Shotwell is an occupational therapist and a member of the EB Center at Cincinnati Children's Hospital.  She also has experience in pediatric hand therapy, development, and feeding disorders.  She has presented on the subject of the role of therapy in children with EB at the debra Patient Care conferences in Cincinnati, Orlando, and Toronto.

Carrie Shotwell


Kristy Steinau, PT, DPT
Physical Therapist
Cincinnati Children's Hospital Medical Center

Kristy Steinau has over seventeen years of experience as a pediatric physical therapist at Cincinnati Children’s Hospital Medical Center. During this time, she has spent sixteen years treating and working with patients who have EB. She was introduced to patients with EB by providing whirlpools and dressing changes. She has been a member of the EB center team since its induction. In 2008, she presented, “Epidermolysis Bullosa and hydrotherapy, both sedated and non-sedated” for DEBRA Chile. She has also presented nationally and internationally on Physical Therapy for patients with EB in Cincinnati, Orlando, and Toronto.

Kristy Steinau


Lisa Taylor, RN, WCN
Pediatric Dermatology
Lucile Packard Children’s Hospital at Stanford

Lisa Taylor has been passionate about pediatric dermatology for the past nine years.  She is honored to work with the amazing families and dedicated physicians who are devoted to better skin treatments for Epidermolysis Bullosa.  Lisa Taylor has a background in neonatal ICU and has spent 20 years working with pediatric oncology.

Lisa Taylor


Jakub Tolar, MD, PhD
Professor and Director, Stem Cell Institute
University of Minnesota

Dr. Jakub Tolar is currently a practicing physician, professor in Pediatric Blood and Marrow Transplantation, and the Director of Stem Cell Institute at the University of Minnesota. Dr. Tolar combines his passion for patient care with his laboratory research in a search for better, safer treatments. He is currently pursuing the possibility of curing genetic disorders by removing, correcting, and reintroducing patients’ cells in the hope that these cells will provide an effective treatment without the negative effects of unrelated donor transplantation.

Jakub Tolar


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