2018 debra Care Conference - Planned Sessions

Early list of presentations - subject to change.

TOPIC SPEAKER
Anemia Dr. Anne Lucky, Cincinnati Children's Hospital
Cell Therapy Update Dr. Jakub Tolar, University of Minnesota
Coping with Chronic Illness Dr. Mark P. Popenhagen, Phoenix Children's Hospital
Diet & Nutrition TBA
EB in Adulthood & Adult-Only Clinic Overview Dr. Dasgeb Bahar, Jefferson University
Eye Care Strategies Dr. Vicki M. Chen, Tufts Medical Center
Gastrointestinal Issues Dr. Michael K. Farrell, Cincinnati Children's Hospital
Gene Therapy Update Dr. Peter Marinkovich, Stanford University
Genetics Breakdown Dr. Andrew South, Jefferson University
Gentamicin-mediated Readthrough Therapy for JEB and RDEB Dr. Mei Chen, University of Southern California
Government Affairs Update Joe Murray, Esq., debra of America
Multidisciplinary Care Dr. Harper Price, Phoenix Children's Hospital
Non-Pharmaceutical Pain Management Techniques Dr. Mark P. Popenhagen, Phoenix Children's Hospital
Occupational Therapy Guidelines Susan Maksomski, OTR/L, CHT, New York Presbyterian Brooklyn Methodist
Pain Management Overview TBA
Patient-Driven Treatment of Hand Contractures Dr. Roger Cornwall, Cincinnati Children's Hospital
Physical Therapy Guidelines Amy Weisman, PT, DPT, PCS, Stanford University
Protections under the Americans with Disabilities Act TBA
Special Care Dentistry Dr. Mark Cannon, Northwestern University – Ann and Robert Lurie Children's Hospital
Squamous Cell Carcinoma Dr. Andrew South, Jefferson University
Symptom Relief Research Dr. Amy S. Paller, Northwestern University
Transitioning to Adult Care - Aging out of Pediatrics Kellie Badger, RN, Phoenix Children's Hospital
Understanding Types of Clinical Research Dr. Anna Bruckner, University of Colorado School of Medicine and Children's Hospital
Update in Management of EBS Dr. Joyce Teng, Stanford University
Why Do I Need to Know My Mutations Causing EB Dr. Jouni Uitto, Jefferson University
Wound Care TBA

Additional research updates and EB Care sessions are being added. Check back often for updates. For questions, email DCC [at] debra [dot] org or call us at 212-868-1573, ext. 104.


2018 debra Care Conference – Speakers

Speakers effective May 17, 2018. We are in the process of collecting all of the speaker's biographies, so check back for updates.

Kellie Badger, RN, BS
EB Nurse
Phoenix Children's Hospital

Kellie Badger is the EB nurse at Phoenix Children's Hospital and has been in this role since the start of the multi-disciplinary clinic in 2011. Kellie is also the clinical coordinator for the Genodermatosis clinic at PCH and carries the role of research nurse for the Dermatology department. Kellie received her Bachelor of Science in Physiology from the University of Arizona and then received her Nursing degree in 2009. She has published and presented on various dermatological conditions, namely EB. Providing care to patients and families affected by EB has become her passion and she enjoys working with each and every one of her patients. "I'm glad we are able to provide family centered care for our patients and so thankful that families place their trust in us to provide the best care possible". Outside of being a nurse, Kellie is married and has two little boys that keep her very busy. She loves to travel and create memories with her family.

Kellie Badger.jpg
 

Anna L. Bruckner, MD
Associate Professor of Dermatology and Pediatrics
University of Colorado School of Medicine and Children's Hospital Colorado

Dr. Bruckner is the director of pediatric dermatology at Children's Hospital Colorado (CHCO) and a faculty member of the University of Colorado School of Medicine. She has been committed to EB since her dermatology residency and was the former director of the EB clinic at Stanford University. She currently co-directs the EB clinic at CHCO and is the lead investigator for the EB Clinical Research Consortium, a collaborative multisite network devoted to clinical research about EB. Her research on EB includes complications and outcomes of EB, as well as clinical trials of new treatments for EB.

Anna Bruckner
 

Mark L. Cannon, DDS, MS
Professor, Department of Otolaryngology, Division of Dentistry
Feinberg School of Medicine
Northwestern University – Ann and Robert Lurie Children’s Hospital

Mark L. Cannon received his Doctorate of Dental Surgery from the University of Nebraska and then attended Northwestern University for his Masters of Pediatric Dentistry. He completed his residency at Children’s Memorial Hospital and received his Diplomate status by the American Board of Pediatric Dentistry. He is a past president of the Illinois Society of Dentistry for Children, a Professor of Otolaryngology, Division of Dentistry at Northwestern University, Feinberg School of Medicine, and a member of the International Association of Pediatric Dentistry. In addition to maintaining a large private practice in the suburbs of Chicago, he is the Research Coordinator of the residency program at Ann and Robert Lurie Children’s Hospital, Chicago, Illinois. Dr. Cannon has presented guest lectures at the University of Athens, Greece, Sao Paulista State University, UNESP, Aracatuba, Brazil, University of Texas- Houston, University of Alabama-Birmingham, and at the University of Illinois, Chicago, Department of Pediatric Dentistry. He has had presentations to the following organizations; I.A.D.R./A.A.D.R., the American Academy of Pediatric Dentistry, the American Society of Dentistry for Children, Academy of Dental Materials, World Congress of Biological Materials, International Association of Pediatric Dentistry, Pediatric Dental Association of Asia, Australasian Academy of Pediatric Dentistry, World Congress of Preventive Dentistry, Mexican Association of Pediatric Dentistry and the European Association of Pediatric Dentistry. Dr. Cannon is a Fellow of the Royal Medical Society, Fellow of the International College of Dentists and elected president of the Chicago Academy of Dental Research.

Mark Cannon
 

MEI CHEN, PhD
Professor
University of Southern California, Department of Dermatology

Dr. Chen is a Professor and Director of USC Laboratories for Investigative Dermatology. Dr. Chen’s research has focused on elucidating various aspects of the cellular and molecular biology of type VII collagen, particularly the characterization of the structure and function of type VII collagen and developing various therapeutic approaches including cell therapy, protein therapy, drug therapy and gene therapy for dystrophic epidermolysis bullosa (DEB), an inherited skin disorder caused by defects in the human gene encoding type VII collagen. Her studies have strong translational potential and bring various therapeutic approaches from the laboratory bench to the bedside of patients with DEB. Her research programs have been continuously supported by NIH grants for the last twenty years.

Mei Chen
 

VICKI M. CHEN, MD
Assistant Professor of Ophthalmology
Tufts Medical Center/ New England Eye Center, Boston, MA

Dr. Chen is a pediatric ophthalmologist who has been caring for children with EB for the past 10 years. Her interest in research began when she learned that patients with severe eye disease had limited treatment options. In 2015, she initiated scientific investigation of mice with DEB to discover how absence of collagen VII affects the eyes. This led to collaboration with Stanford University to test human collagen VII eye drops. She is currently conducting a national survey to understand how much eye problems impact patients and families. Her ultimate goal is to develop safe and effective therapies for EB.

Vicki Chen
 

Roger Cornwall, MD
Surgical Director, Epidermolysis Bullosa Center
Cincinnati Children's Hospital Medical Center

Dr. Cornwall has been a full time pediatric hand surgeon for 14 years, after completing his education and training at Stanford University, Columbia University, Mount Sinai Hospital, Harvard University, and the Children’s Hospital of Philadelphia. However, the vast majority of Dr. Cornwall’s education in the care of EB comes from the children and families he has encountered since joining the Cincinnati Children's Epidermolysis Bullosa Center 9 years ago. His care philosophy revolves around doing things FOR patients, not just TO them, and central to that philosophy is balancing risks and benefits of interventions to maximize overall hand function.

Roger Cornwall, MD
 

MICHAEL K. FARRELL, MD
Professor of Pediatrics, University of Cincinnati College of Medicine
Cincinnati Children's Hospital Medical Center

Dr. Farrell graduated from Jefferson Medical College in 1970. After military service, he completed Pediatric Residency and Fellowships at Cincinnati Children's. Currently Pediatric Gastroenterologist at Cincinnati Children's Hospital, Professor of Pediatrics at University of Cincinnati College of Medicine. He is the former Chief of Staff of Children's Hospital and Pediatric Residency Director. He has been involved in a multi-disciplinary EB team for over ten years.

Michael Farrell, MD
 

Anne W. Lucky, MD
Medical Director, Cincinnati Children's EB Center
Cincinnati Children's Hospital

Dr. Lucky is the Medical Director of the Cincinnati Children's Epidermolysis Bullosa Center in Cincinnati, OH. She has had over 30 years of experience caring for children and adults with EB. Her training has been in Pediatrics and Pediatric Dermatology at the Yale University School of Medicine, New Haven CT and the Boston Children's Hospital, Boston, MA. She is author of over 200 peer reviewed scientific papers. She is currently an Adjunct Professor of Dermatology and Pediatrics at the University of Cincinnati College of Medicine.

Anne W. Lucky, MD
 

Susan Maksomski, OTR/L, CHT
Director of Rehabilitation Medicine
New York Presbyterian Brooklyn Methodist

Susan Maksomski has been working as an Occupational Therapist/Certified Hand Therapist at the New York Presbyterian Hospital for 21 years. She has worked with children suffering from Epidermolysis Bullosa for eleven years in an interdisciplinary setting, as well as, individually. Susan has been certified as a hand therapist for fifteen years specializing in upper extremity rehabilitation for both adults and children. She has attended the DEBRA Patient Care Conference previously and has 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 seventeen years. She recently obtained a Master’s 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
 

Joe Murray, ESQ.
Director of Government & Legal Affairs
debra of America

Joe is debra of America's Director of Government and Legal Affairs. Before joining debra in April of 2015, he served in a wide array of legislative policy and leadership roles on Capitol Hill in Washington, DC in both the United States House of Representatives and the United States Senate with an emphasis in health care, entitlement, and educational areas. Joe has served in a leadership position in a number of civic and political organizations including local, state, and national political campaigns, his local civic association, the Virginia Disability Commission, as well as a neighborhood organization organized for snow removal parking regulation reform efforts. Since 2013, he has served as a Deacon (2017 Chairman) in his local church and a Sunday school teacher to Fourth Grade boys. He is a licensed attorney in Virginia, having earned his law degree from the Catholic University of America Columbus School of Law in Washington, DC and his BA in Politics (Economics minor) from Rutgers University in New Brunswick, New Jersey. He and his wife, Katie, reside in the suburbs of Washington, DC in northern Virginia while raising their three young children, Ella (10 years old, RDEB), AJ (4 years old), Maggie Jo (10 months old), and Sabrina, their beloved cockapoo dog (5 years old).

Joe Murray
 

Amy S. Paller, MD
Walter J. Hamlin Professor and Chair of Dermatology and Professor of Pediatrics
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 Lurie Children’s Hospital from 1988-2004 and became Chair of Dermatology in 2004. She has been President of the Society for Pediatric Dermatology, Society for Investigative Dermatology, Women's Dermatologic Society, and International Society for Pediatric Dermatology; she was the inaugural co-Chair of the Pediatric Dermatology Research Alliance and inaugural President of the International Eczema Council. Dr. Paller is an NIH-funded investigator who serves on the Council of NIAMS, the NIH institute that focuses on skin.. Her clinical interests focus on genetic disorders of the skin, including epidermolysis bullosa, and inflammatory skin disorders in children. Her laboratory works on the role of skin and nerves in wound healing, and the topical delivery of nanoparticles that regulate genes in skin as therapy for skin disorders. Dr. Paller has directed the Pediatric Dermatology Clinical Trials Unit at Northwestern since the early 1990's, and has been the lead investigator on several EB trials. She has been the author or editor of several leading dermatology books and journals. Dr. Paller is currently Chair of the American Academy of Dermatology’s Patient Advocacy Task Force and serves or has served on the Scientific Advisory Board of several support groups for patients, including DEBRA.

Amy Paller
 

Mark P. Popenhagen, PsyD
Director – Mental Health Services
PCH Complex Chronic Pain Program
Phoenix Children's Hospital

Mark P. Popenhagen, PsyD, is a psychologist with clinical specialization in Pediatric Psychology, Pain Management, and Epidermolysis Bullosa. He received his doctoral degree at the Minnesota School of Professional Psychology in Egan, Minnesota. After completing his fellowship in Pediatric Psychology at St. Jude Children’s Research Hospital in Memphis, Tennessee, he continued on as their pain psychologist and later went on to pursue further pain management and palliative care opportunities at the University of Colorado/Children’s Hospital of Colorado and Loyola University Medical Center/Ronald McDonald Children’s Hospital.
Dr. Popenhagen is an Associate Professor at Barrow Neurological Institute at Phoenix Children's Hospital as well as at the University of Arizona School of Medicine – Phoenix in the Departments of Child Health and Psychiatry. He joined the Department of Psychology and the Pain Medicine Service at Phoenix Children's Hospital in early 2013 and serves as the Director of Mental Health Services for the Pain Medicine Service. Dr. Popenhagen focuses his efforts on inpatient and outpatient nonpharmacologic treatment of acute and chronic pain for a variety of conditions such as epidermolysis bullosa, injuries/trauma, amplified musculoskeletal pain, migraine headaches, abdominal pain, hyperalgesias, and postconcussive headaches. Dr. Popenhagen has co-authored several book chapters and journal articles on pain and is a frequent invited lecturer on the topics of pediatric pain management and coping with chronic illness.

Mark P. Popenhagen
 

HARPER PRICE, MD
Division Chief of Dermatology
Phoenix Children’s Hospital

Dr. Price completed her medical degree at Thomas Jefferson Medical College in Philadelphia, PA and her internship and dermatology training at Penn State Milton S. Hershey Medical Center in Hershey, PA. She joined Dr. Ronald Hansen at Phoenix Children's Hospital (PCH) in 2009 after completing her pediatric dermatology fellowship at New York University and became the program director of the pediatric dermatology fellowship shortly after joining PCH. Dr. Price is the director of the multidisciplinary Congenital and Genetic Skin Disease Clinic and Epidermolysis Bullosa Clinic at PCH. In 2014, Dr. Price accepted the position of Division Chief of Dermatology at PCH. She is an active member and fellow of the American Academy of Dermatology, American Academy of Pediatrics, and the Society for Pediatric Dermatology. Dr. Price contributes to the field of pediatric dermatology through speaking at local and national meetings, writing textbook chapters and publishing in peer-reviewed journals. Areas of interest and research include genetic skin disease, vascular anomalies, pediatric melanoma and congenital nevi, hair and nail disorders, pediatric lasers/surgery as well as resident and fellow education.

Harper Price
 

Dr. ANDREW SOUTH
Associate Professor
Thomas Jefferson University

Dr. South is an Associate Professor at Thomas Jefferson University, Philadelphia. He received his PhD from the University of London, UK, and trained at St John’s Institute of Dermatology, also in London. Dr. South’s research focuses on improving our understanding of the molecular mechanisms contributing to epidermolysis bullosa and how we can harness this knowledge to improve patient care. He has had a long standing interest in understanding why cancer in dystrophic epidermolysis is so life threatening. Dr. South’s work has been continuously supported by EB foundations since 1999.

Andrew South
 

JOYCE M.C. TENG
Clinical Professor of Dermatology & Pediatrics
Stanford University

Dr. Teng is a clinical professor of Dermatology and Pediatrics at Stanford University. She also serves as the chief of pediatric dermatology as well as the fellowship director. Prior to joining Stanford University, Dr. Teng was the chief of pediatric dermatology at the University of Wisconsin- Madison. She received her MD and postgraduate residency training from the Vanderbilt University; before completing fellowship in pediatric dermatology at the University of Colorado Health and Science Center. Dr. Teng’s clinical and translational research focuses on understanding the pathogenesis of genetic diseases and targeted therapy discovery. She has authorized many book chapters and peer-reviewed articles.

Joyce Teng
 

Jakub Tolar, MD, PhD
Dean, Medical School; Professor, Pediatrics, Blood & Marrow Transplantation
University of Minnesota

Dr. Tolar is originally from the Czech Republic, and received his medical education in Prague at the Charles University. In 1992, he came to the University of Minnesota, where he completed his PhD in Molecular, Cellular & Developmental Biology and Genetics. He is currently Dean of the Medical School, Vice President for Health Sciences ad interim, a distinguished McKnight Professor in the Department of Pediatrics, Blood and Marrow Transplantation, the Edmund Wallace Tulloch & Anna Marie Tulloch Chair in Stem Cell Biology, Genetics & Genomics, and the Director of the Stem Cell Institute.

Dr. Tolar's research focuses on finding new ways of treating children with lethal diseases - cancer, inborn errors of metabolism, and devastating genetic disorders - using stem cell transplantation. He is also looking for safer and more effective methods of repairing and using a patient's own cells in diseases such as epidermolysis bullosa, mucopolysaccharidosis type I (Hurler syndrome), Fanconi anemia, and dyskeratosis congenita.

Jakub Tolar MD PhD
 

JOUNI UITTO, MD, PhD
Professor and Chair
Thomas Jefferson University

Jouni Uitto, MD, PhD, has been Professor of Dermatology and Cutaneous Biology, and Biochemistry and Molecular Biology, and Chair of the Department of Dermatology and Cutaneous Biology at the Sidney Kimmel Medical College, in Philadelphia, Pennsylvania, since 1986. He is also Director of the Jefferson Institute of Molecular Medicine at Thomas Jefferson University and Co-Director of the Jefferson Center for International Dermatology. He received his MD and PhD degrees from the University of Helsinki, Finland, and completed his residency training in dermatology at Washington University School of Medicine in St. Louis, Missouri.

Jouni Uitto
 

Amy Weisman, PT, DPT, PCS
Pediatric Physical Therapist
Stanford Children’s Health

Amy has been a pediatric physical therapist at Lucile Packard Children's Hospital at Stanford, working in the inpatient and outpatient settings for the last 12 years. Amy joined the Stanford Children's Health Multidisciplinary Epidermolysis Bullosa Clinic in 2014, and truly enjoys working with all the wonderful patients, their amazing families and dedicated providers. Amy is the Lead Clinician for the development of physical therapy clinical practice guidelines for EB patients.

Amy Weisman
 

 


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