2012 Patient Care Conference Speakers

PAGE 2/2

Susan Maksomski, ORT/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 14 years. She has worked with children suffering from Epidermolysis Bullosa for over four years in an interdisciplinary setting, as well as individually. Susan attended the DebRA Patient Care Conference in 2008 and gained significant knowledge from patients and families dealing with Epidermolysis Bullosa.  She has 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 eleven years.

Susan Maksomski


Danielle Malchano RN, BSN, WCC
Specialty Account Manager
National Rehab (NR)

Danielle Malchano has been a nurse for 29 years, and in 2010, obtained her wound care certification. She has worked at NR for 11 years, the last five as a member of NR’s dedicated EB Advocate Team. She meets with physicians to make them aware of NR's ability to provide wound care products directly to their EB patients, provides wound care education to dermatology residency programs and educational programs to healthcare providers to increase their EB awareness and also volunteers at camps for people with skin conditions. Prior to NR, she served as a clinical consult for Highmark BCBS.

Danielle Malchano


Amy Paller, MD
Professor and Chair of Dermatology, Professor of Pediatrics
Northwestern University

Dr. Paller is the Walter J. Hamlin Chair and Professor of Dermatology and Professor of Pediatrics at Northwestern University. She did graduate work in genetics at Brown, medical school at Stanford, postdoctoral fellowship in EB at University of N. Carolina, and residencies in Pediatrics and Dermatology at Northwestern. Her clinical work focuses on genetic skin disorders. An author of more than 350 original publications, Dr. Paller has several grants from the National Institutes of Health, including one to develop a gene therapy approach that could be applied to EB simplex. Dr. Paller is on the Scientific Advisory Board of DEBRA.

Dr. Amy Paller


Elena Pope, MD, FRCPC
Associate Professor, University of Toronto
Head, Dermatology, Hospital for Sick Children

Dr. Elena Pope is an Associate Professor of Paediatrics, University of Toronto and Director, Section of Dermatology, Hospital for Sick Children. Her main areas of clinical focus are Epidermolysis Bullosa, Cutaneous T-cell lymphomas and vascular tumours. She is an academic-clinician and is involved in many aspects of teaching, educational development and evaluation.

Dr. Elena Pope


Mark P. Popenhagen, Psy.D.
Pediatric Psychologist
Dreyer Medical Clinic

Dr. Mark Popenhagen is a Pediatric Psychologist specializing issues related to pain and chronic illnesses. In 2001, he earned his doctorate at Minnesota School of Professional Psychology. After completing a postdoctoral fellowship at St. Jude Children’s Research Hospital, he continued as their Pain Psychologist before joining the Pediatric Pain Team at the University of Colorado Health Sciences Center. Dr. Popenhagen then co-developed the pain and palliative care teams at Loyola University Medical System/Ronald McDonald Children’s Hospital before moving to his current position at Dreyer Medical Clinic in Aurora, Illinois.

Dr. Mark Popenhagen


John Saroyan, MD, FAAP
Assistant Professor of Pediatric Pain Management and Palliative Care in Anesthesiology
Assistant Professor of Pediatrics, College of Physicians and Surgeons
Columbia University

Dr. John Saroyan is an Assistant Professor of Pediatric Pain Management and Palliative Care in Anesthesiology, and Assistant Professor of Pediatrics, as well as Program Director for the Hospice and Palliative Medicine Fellowship at the Columbia University College of Physicians and Surgeons. He is Medical Director of the Pediatric Advanced Care Team at New York-Presbyterian Morgan Stanley Children's Hospital. Dr. Saroyan’s clinical practice includes inpatient and outpatient settings and his patients range in age from neonates to young adults. His research has included measuring pediatric pain management knowledge of resident trainees, communication of pain and symptoms in seriously ill children, and opioid prescribing practices of pediatric clinicians. He is and has been the pain, symptom management and palliative care pediatrician for approximately thirty patients with Epidermolysis Bullosa.

Dr. John Saroyan


Carrie Shotwell
Occupational Therapist II
Cincinnati Children's Medical Center

Carrie Shotwell is a Pediatric Occupational Therapist, and has worked at Cincinnati Children’s Medical Center for the past 7 years. She has been an Occupational Therapist in the EB Center for 4 years.  In 2010, Carrie Shotwell presented “The Occupational Therapist’s Role in Managing EB” to the Occupational Therapy Regional Meeting in Cincinnati. She co-presented “OT & PT for Children with EB” at the 2010 Debra Regional Meeting in Cincinnati. Carrie also co-presented “Introduction to Pediatric Splinting” to Occupational Therapy students at Xavier University, Cincinnati in 2010, 2011, and 2012.

Carrie Shotwell


John T Smith, MA,OTR
Occupational Therapist
Mt. Sinai Hospital

John T Smith was introduced to occupational therapy by a relative receiving OT for severe, disfiguring burns. Inspired by OT’s focus on function and adaptation, John received an MA in OT from NYU in 1991. John’s work focus evolved into pediatrics, development and feeding. He received certifications in NOMAS, an infant feeding assessment tool and Dr. Brazelton’s NBAS, an infant neuro-behavioral assessment tool. John began working with Epidermolysis Bullosa while working at New York Presbyterian/ Morgan Stanley’s Children Hospital of New York’s NICU and clinic. He continued his work with EB in home care where he learned a new meaning of adaptation and function. Presently he works at Mt Sinai Hospital, New York, NY in Pediatrics. He is continually inspired by EB children and families.

John Smith


Traci Stein, PhD, MPH
Clinical Health Psychologist

Dr. Traci Stein is a clinical health psychologist who received her PhD, MS, and MPhil degrees in clinical psychology from Columbia University, and an MPH in community health education from New York University. She is fellowship-trained in pain management psychology and works with children and adults presenting with a wide range of medical and psychological issues. Dr. Stein has expertise in a variety of complementary approaches, including hypnotherapy and guided imagery, biofeedback, and mindfulness training. She is also the former director of integrative medicine at Columbia University. Dr. Stein currently has a private practice in Manhattan, is a clinical supervisor at Teachers College, Columbia University, and the Complementary & Alternative Medicine topic expert at GoodTherapy.org.

Dr. Traci Stein


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

Kristy Steinau has over fifteen years of experience as a pediatric physical therapist. During this time, she has spent at least fourteen years treating and working with patients who have Epidermolysis Bullosa. She has been a member of the EB Center team since its induction in 2003. In 2008, she presented on EB and hydrotherapy, both sedated and non-sedated, for DEBRA Chile. Additionally, she presented at the 2010 Patient Care Conference on general physical therapy needs. Kristy continues to work with patients who have EB and learn from them and their families.

Kristy Steinau


Peter J. Stern, MD
Chairman and Professor
University of Cincinnati

Dr. Peter J. Stern received his Orthopaedic specialty education at the Harvard Combined Program and completed a hand surgery fellowship with Dr. Harold E. Kleinert. In 1992, he was appointed Chairman of the University of Cincinnati, Department of Orthopaedic Surgery, and is the Norman S. and Elizabeth C.A. Hill Professor of Orthopaedic Surgery. He has served as the President of the American Society for Surgery of the Hand in 2000, the American Board of Orthopaedic Surgery, and the American Orthopaedic Association. He has served on the Board of Trustees of the Orthopaedic Research and Education Foundation. Dr. Stern has trained 40 fellows and over 100 orthopaedic residents.

Dr. Peter Stern


Jakub Tolar, MD, PhD
Associate Professor
University of Minnesota

Dr. Tolar received his medical education in Prague, and came from the Czech Republic in 1992 to complete his PhD in Molecular, Cellular & Developmental Biology and Genetics at the University of Minnesota. He is currently an associate professor in Pediatric Blood and Marrow Transplantation and the Director of Stem Cell/Gene Therapies at UMN. Dr. Tolar focuses on clinical protocols using hematopoietic stem cell transplant as a treatment for RDEB, JEB, Hurler syndrome, Fanconi anemia, dyskeratosis congenita, and severe aplastic anemia. He combines his passion for patient care with his laboratory research in a search for better, safer treatments.

Dr. Jakub Tolar


John Wagner, MD
Director of Blood and Marrow Transplant
University of Minnesota

Dr. John Wagner is a Professor in the Department of Pediatrics, Director of the Blood and Marrow Transplant Program, and Co-Director of the Center for Translational Medicine and Scientific Director of Clinical Research for the Stem Cell Institute at the University of Minnesota. He holds two endowed chairs – Children's Cancer Research Fund/Hageboeck Family Chair in Childhood Cancer Research, and the University of Minnesota McKnight-Presidential Chair. Dr. Wagner received his M.D. at Jefferson Medical College, completed his internship and residency in Pediatrics at Duke University School of Medicine in 1984, and a postdoctoral fellowship in Hematology-Oncology at the Johns Hopkins School of Medicine in 1987 where he remained until joining the faculty at the University of Minnesota in 1991. Dr. Wagner is board certified in Pediatrics and Pediatric Hematology/Oncology. He is recognized for pioneering the use of umbilical cord blood transplantation, use of embryo selection to insure an HLA matched, healthy child (‘savior sibling’) for couples at high risk for a genetic disease, and use of stem cell populations to repair the skin in severely affected children with EB.

Dr. John Wagner


Eric Wittkugel, MD
Associate Professor, Clinical Anesthesia and Pediatrics
Cincinnati Children’s Hospital

Dr. Eric Wittkugel is a pediatric anesthesiologist at Cincinnati Children's Hospital where he is an anesthesiology consultant to the Epidermolysis Bullosa Center. He completed his pediatric residency at the Children’s Hospital of Philadelphia, anesthesiology residency at the University of Pennsylvania and a fellowship in pediatric anesthesiology at the Children’s Hospital of Philadelphia. During the last 20 years, he has cared for many children with EB undergoing a wide variety of surgical procedures. He has written and spoken widely about anesthesia for children with EB. He is delighted to discuss essential information about anesthesia for your child with EB.

Dr. Eric Wittkugel


J. Timothy Wright, DDS, MS
Bawden Distinguished Professor and Chair
University of North Carolina

Dr. J. Timothy Wright received his DDS degree from West Virginia University and Pediatric Dentistry training at the University of Alabama at Birmingham. Dr. Wright is the James Bawden Distinguished Professor and Chair in the Department of Pediatric Dentistry at the University of North Carolina. His research involves characterizing and treating developmental defects of teeth and bone and he has completed extensive research on the oral manifestations and treatment of Epidermolysis Bullosa. His research has been funded by the National Institutes of Health since 1987 and has over 170 scientific publications.

Dr. Timothy Wright
PAGE 2/2