The 2020 DCC planning is in progress and the agenda is still being developed. Please check back often, as more topics will be added soon! For any inquiries related to the program, please email DCC@debra.org.

Topics

Basics and Updates in Management of EB Simplex: What is Complicated About EB Simplex
Joyce M. C. Teng, MD, PhD, FAAD, Stanford University School of Medicine

Clinical Trials - Personal Experiences and Perspectives
Community Members

Clinical Trials Explained - Making Informed Decisions
Amy S. Paller, MD, Northwestern University Feinberg School of Medicine

Dressing Wounds in Tricky Areas
Gretchen Lilja, RN, University of Minnesota Masonic Children's Hospital

EB and Eye Care Updates
Vicki M. Chen, MD, Tufts Medical Center/ New England Eye Center

Gastrointestinal Care of EB

Gene Therapy for EB Update
M. Peter Marinkovich, MD, Stanford University School of Medicine

Genetics of EB
Dr. Andrew South, Thomas Jefferson University

How to Build a Life: Quick Tips for Everyday Life with EB plus an Intro to Lifestyle Development Strategies
Alex R. King, OTR/L, CCLS, CTRS, Phoenix Children's Hospital

Importance of Preventative Monitoring for EB
Anne W. Lucky, MD, Cincinnati Children's Hospital

Long-term follow-up of Bone Marrow Transplant RDEB and JEB patients and outcomes of post-transplant skin grafting from bone marrow donors
Christen L. Ebens, MD, MPH, University of Minnesota, Pediatric Blood and Marrow Transplantation, Comprehensive EB Center

Nutritional Management of Epidermolysis Bullosa: Identifying Needs From A to Zinc
Colleen Vicente, RD, LDN, Children's Hospital of Philadelphia

Occupational Therapy EB Guidelines
Jennifer Chan, Lucile Packard Children’s Hospital, Stanford Children's Health

Oral Health Care for Epidermolysis Bullosa Patients and Caregivers
Dr. Mark Cannon, Northwestern University, Ann and Robert Lurie Children's Hospital

Pain and Itch in EB: An Update
Kenneth R. Goldschneider, MD, Cincinnati Children's Hospital

Pain Management, Non-Pharmaceutical Focused Strategies
Mark P. Popenhagen, PsyD, ABPP, Phoenix Children's Hospital

Physical Therapy & EB
Amy Weisman, PT, DPT, PCS, Stanford Children’s Health

Research, Sponsor Session: Abeona Therapeutics Update
Jodie Gillon, Abeona Therapeutics

Sex and EB: What we know, what we think we know, and what we need to figure out
Mark Popenhagen, Alex King, Michelle Lahat

Squamous Cell Carcinoma and EB - Therapeutic Updates
Dr. Andrew South, Thomas Jefferson University

Strategies for Anticipatory Anxiety
Mark P. Popenhagen, PsyD, ABPP, Phoenix Children's Hospital

Teen Talk: An Open Discussion For Teens and Young Adults Living with EB

Wound Care Management
Gretchen Lilja, RN, University of Minnesota Masonic Children's Hospital

Topics are subject to change. See below for the biographies of the 2020 DCC Presenters, and check back soon for more! 

Presenters

Dr. Mark Cannon

Cannon

Professor, 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 Society of Medicine, Fellow of the International College of Dentists and elected president of the Chicago Academy of Dental Research. He has humbly accepted invitations to The Nobel Forum and The Nobel Assembly, Stockholm, Sweden.

Speaking Topics:

  • Oral Health Care for Epidermolysis Bullosa Patients and Caregivers 
Jennifer Chan

Chan

Pediatric Occupational Therapist and Certified Hand Therapist, Lucile Packard Children’s Hospital, Stanford Children's Health

Jennifer Chan is a pediatric occupational therapist and certified hand therapist working at Lucile Packard Children’s Hospital in Palo Alto, California. She has worked as a pediatric OT for over 30 years. The last 10 years Jennifer has specialized in pediatric hand therapy and has participated in specialty clinics at LPCH including brachial plexus palsy and a monthly epidermolysis bullosa clinic. Her work as part of the EB clinic team has inspired an interest to develop resources for occupational therapists working with persons with EB. Jennifer is completing a research study with patients with RDEB to add to the body of research to guide clinicians in providing care. In addition, with funding and support from Debra America and Debra International Jennifer has been the lead for an international panel to create a clinical practice guideline for occupational therapists working with persons with EB. The panel is happy to be nearing the end of the process and hopes the information will benefit persons with EB and those caring for them.

Speaking Topics:

  • Occupational Therapy EB Guidelines
Vicki M. Chen, MD

Chen

Assistant Professor of Ophthalmology, Tufts Medical Center/ New England Eye Center

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.

Speaking Topics:

  • EB and Eye Care Updates
Christen L. Ebens, MD, MPH

christen ebens

Assistant Professor, University of Minnesota, Pediatric Blood and Marrow Transplantation, Comprehensive EB Center

Dr. Christen Ebens co-directs of the Comprehensive EB Center at the University of Minnesota and is a physician in the division of Pediatric Blood and Marrow Transplantation. Her medical training focused on hematology, stem cell transplant, and immunology. In addition to providing direct patient care to families affected by EB, Dr. Ebens partners with Dr. Jakub Tolar and his research laboratory members to design and implement innovative new treatments for EB, including hematopoietic cell transplant (also known as bone marrow transplant), mesenchymal stromal cell infusion, epidermal skin grafting, immune targeting therapies, and gene therapy.

Speaking Topics:

  • Long-term follow-up of Bone Marrow Transplant RDEB and JEB patients and outcomes of post-transplant skin grafting from bone marrow donors
Kenneth R. Goldschneider, MD

Goldschneider

Director, Pain Management Center, Cincinnati Children's Hospital

Dr. Goldschneider has been Director of Pain Management programs at Cincinnati Children's since 1999. He has been involved with the care of folks with EB for most of that time, both in clinic and in the operating room. He led the development of the pain clinical practice guidelines used by DEBRA. He has been involved in the innovative use of medication and non-medication treatment for pain and itch in folks with EB.

Speaking Topics:

  • Pain and Itch in EB: An Update
Alex R. King, OTR/L, CCLS, CTRS

Occupational Therapist, Phoenix Children's Hospital

Alex is an occupational therapist focusing on making an impact on the effect of EB on daily activities and lifestyles. Alex has served in Phoenix Children's Hospital's EB Specialty Clinic for over 5 years, attended winter adventure camp at Camp Spirit in Colorado for the past 3 years, and worked closely with partners around the world to build clinical practice guidelines through Debra International. Most recently, Alex has been focused on the development of Clinical Practice Guidelines for addressing the topic of sexuality in the context of EB.

Speaking Topics: 

  • How to Build a Life: Quick Tips for Everyday Life with EB plus an Intro to Lifestyle Development Strategies
  • Sex and EB: What we know, what we think we know, and what we need to figure out
  • Teen Talk: An Open Discussion For Teens and Young Adults Living with EB
Anne W. Lucky, MD

Lucky

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.

Speaking Topics:

  • Importance of Preventative Monitoring for EB 
M. Peter Marinkovich, MD

Marinkovich

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.

Speaking Topics:

  • Gene Therapy for EB Update
Amy S. Paller, MD

Paller

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.

Speaking Topics:

  • Clinical Trials Explained - Making Informed Decisions
Mark P. Popenhagen, PsyD, ABPP

Popenhagen

Vice Chief of Psychology; Head of Mental Health Services for the Pain Medicine Service, Phoenix Children's Hospital

Dr. Mark Popenhagen is a board-certified pediatric psychologist who is the Vice Chief of Psychology and the head of mental health services for the Pain Medicine Service at Phoenix Children's Hospital in Arizona. He has authored/co-authored several publications and posters on pain management and is frequently invited to lecture on pediatric pain, coping with chronic illness, EB, and palliative care. Dr. Popenhagen has collaborated with debra of America since 2008 and debra International since 2018 as a regular conference presenter, on the scientific advisory board, and in the development of clinical practice guidelines in both Sexuality and in Palliative Care.  

Speaking Topics:

  • Pain Management Non-Pharmaceutical Strategies
  • Sex and EB: What we know, what we think we know, and what we need to figure out
  • Strategies for Anticipatory Anxiety
  • Teen Talk: An Open Discussion For Teens and Young Adults Living with EB
Dr. Andrew South

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.

Speaking Topics:

  • Genetics of EB
  • Squamous Cell Carcinoma and EB - Therapeutic Updates
Joyce M. C. Teng, MD, PhD, FAAD

Teng

Clinical Professor of Dermatology and Pediatrics, Stanford University School of Medicine

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.

Speaking Topics:

  • Basics and Updates in Management of EB Simplex: What is Complicated About EB Simplex
Colleen Vicente, RD, LDN

Registered Dietitian, Children's Hospital of Philadelphia

Colleen is a Registered Dietitian at Children’s Hospital of Philadelphia. She obtained her BS at Drexel University and completed a pediatric focused dietetic internship at St. Christopher’s Hospital for Children in 2011. She specializes in managing the nutrition for patients with Epidermolysis Bullosa, general gastrointestinal conditions and those who require supplemental nutrition through a feeding tube. She has also worked with patients with burns, cancer and those requiring a special diet to manage seizures. She is passionate about helping others to feel better and become healthier through balanced nutrition.

Speaking Topics:

  • Nutritional Management of Epidermolysis Bullosa: Identifying Needs From A to Zinc
Amy Weisman, PT, DPT, PCS

Weisman

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.

Speaking Topics:

  • Physical Therapy & EB