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2014 Patient Care Conference SpeakersPLATINUM SPONSORKaycie ArtusPhysical TherapistDirector, Camp Spirit ColoradoGOLD SPONSORSKaycie Artus has worked with children with EpidermolysisBullosa for over 30 years. She has a special place in herheart for this population. She was the physical therapist in theChildren's Hospital Colorado EB Multi-specialty Clinic untilher retirement in 2012. She continues to run the EB WinterAdventure Camp for Children with Recessive Dystrophic EB.Marita Black, PT, DPT, PCSAssistant Head Physical TherapistMorgan Stanley Children's Hospital of New YorkMarita Black is the Assistant Head Physical Therapist atMorgan Stanley Children's Hospital of New York. Along withworking in the Neonatal Intensive Care Unit and treatingoutpatients, she also functions as the primary PhysicalTherapist for the Epidermolysis Bullosa (EB) clinic atColumbia University Medical Center. Marita has ten years ofexperience as a Physical Therapist, including more thanseven years in pediatrics. She has worked with children of allSILVER SPONSORages who are diagnosed with EB and has been involved inresearch after bone marrow transplants. Marita is a PediatricCertified Specialist. She received her Transitional Doctorateof Physical Therapy from Temple University, a PhysicalTherapy Master's degree from Boston University, and aBachelors of Science degree in Psychobiology fromBRONZE SPONSORSBinghamton University.John C. Browning, MDAssistant Professor of Pediatrics and DermatologyBaylor College of Medicine and Children's Hospital ofSan AntonioDr. John Browning is an assistant professor at Baylor Collegeof Medicine where he is Chief of Dermatology at theChildren's Hospital of San Antonio. He directs theepidermolysis bullosa clinic at that site. Dr. Browning is chairof the American Academy of Dermatology's Camp DiscoveryProgram, which provides summer camp free of charge forchildren with skin disorders. He is the founding dermatologistof Camp Dermadillo (Camp Discovery - Texas) where hecontinues to volunteer his time every summer.EXHIBITORSAnna L. Bruckner, MDAssociate Professor of Dermatology and PediatricsCo-Director, Epidermolysis Bullosa ClinicUniversity of Colorado School of Medicine, Children'sHospital ColoradoDr. Bruckner is a pediatric dermatologist at Children's HospitalColorado and a faculty member of the University of ColoradoSchool of Medicine. She has been committed to EB since herdermatology residency. In her former position at StanfordUniversity, she directed the monthly multidisciplinary EBclinic, and she spearheaded the formation of the EB ClinicalResearch Consortium (EBCRC). She co-directs the EB clinicat Children’s Hospital Colorado now. Her research on EBincludes bone health in EB, clinical trials, using EBCRC datato study outcomes of EB, and the cooperative developmentand validation of an outcomes measure for EB.
Mark L Cannon, DDSAssociate Professor Feinberg School of MedicineNorthwestern UniversityDr. Mark L. Cannon received his Doctorate of Dental Surgeryfrom the University of Nebraska, then attended NorthwesternUniversity for his Masters of Pediatric Dentistry. Hecompleted his residency at Children’s Memorial Hospital andreceived his Diplomate status by the American Board ofPediatric Dentistry. After completing his hospital residencyand obtaining his Masters in the specialty of PediatricDentistry, Dr. Cannon was asked to stay as a Facultymember of Northwestern University Dental School. He haskept up teaching as clinical Associate Professor of theFeinberg School of Medicine, and is the ResearchCoordinator for the Pediatric Dental Program at the Ann andRobert Lurie Children’s Hospital of Chicago. Dr. Cannon hasbeen involved in research for many years, developing newproducts and techniques for dentistry and obtaining patents.In addition to maintaining a large private practice in thesuburbs of Chicago, he has lectured at many national andinternational meetings, often as the keynote speaker. He haspresented to a number of state and local dental societies.Roger Cornwall, MDDirector of Hand and Upper Extremity CenterCincinnati Children's Hospital Medical CenterDr. Cornwall has been a full time pediatric hand surgeon for10 years, after completing his education and training atStanford University, Columbia University, Mount SinaiHospital, Harvard University, and the Children’s Hospital ofPhiladelphia. However, the vast majority of Dr. Cornwall’seducation in the care of EB comes from the children andfamilies he has encountered since joining the CincinnatiChildren's Epidermolysis Bullosa Clinic 5 years ago. Inkeeping with that perspective, Dr. Cornwall’s research hasbeen the first to study patient-reported measures of handfunction in EB, as well as the impact of hand surgery onthose measures.Susan K. DeClercqAssistant United States AttorneyUnited States Attorney's Office - Eastern District ofMichiganSusan K. DeClercq is an Assistant United States Attorney inDetroit, Michigan specializing in civil rights cases, includingfair housing, police misconduct, equal employment, anddisability law. Prior to joining the U.S. Attorney’s Office in2004, Ms. DeClercq was a litigation associate at the law firmof Skadden, Arps, Slate, Meagher, & Flom, LLP inWashington, DC and served as a law clerk to U.S. DistrictCourt Judge Avern Cohn.
Ravi Elluru MD, PhDAssociate ProfessorCincinnati Children's Hospital/ Division of PediatricOtolaryngology; University of Cincinnati College ofMedicine, Department of OtolaryngologyDr. Elluru is a pediatric otolaryngologist at CincinnatiChildren's Hospital, and has been in practice for 11 years. Hecompleted medical school at UT Southwestern MedicalCenter in Dallas, Texas and a residency in otolaryngologyhead and neck surgery at Washington University School ofMedicine in St. Louis, Missouri. He completed specializedtraining in pediatric Otolaryngology at Cincinnati Children'sHospital. Dr. Elluru has been part of the EB Center atCincinnati Children's Hospital for the last 5 years, helping theEB team manage ENT issues in patients with EB. Of all thedifferent children he sees in his daily work life, he is mostpassionate regarding the care he deliver to children with EB.Most of the "real" learning he has had on this diseaseprocesses has come from the parents of the children hetreats. Dr. Elluru consider this opportunity to talk with themone of the biggest honors in his life.Michael K. Farrell, MDChief of Staff - Cincinnati Children's Hospital MedicalCenterProfessor of Pediatrics - University of Cincinnati Collegeof MedicineCincinnati Children's Hospital Medical CenterDr. Farrell is a Pediatric Gastroenterologist with thirty-fiveyears of experience. He completed his pediatric residencyand fellowships at Cincinnati Children's. He is Chief of Staffat Cincinnati Children's and Professor of Pediatrics at theUniversity of Cincinnati College of Medicine. He is a memberof the multi-disciplinary EB team. His interests are generalgastroenterology and clinical nutrition.Kenneth R. Goldschneider, MD, FAAPDirector, Cincinnati Children's Pain Management CenterCincinnati Children's Hospital Medical CenterKenneth Goldschneider, MD, FAAP, is professor of ClinicalAnesthesia and Pediatrics and is Director of the PainManagement Center and is a leading expert in treatingcomplex chronic pain conditions in infants, children andyoung adults. He can be found mostly commonly at work,having fun adventures with his family, riding on the nearbybike trail or playing music (so a meeting in Music City is OKby him!)
John Lynn Jefferies, MD, MPH, FACC, FAHADirector, Advanced Heart Failure and CardiomyopathyCincinnati Children's Hospital Medical CenterDr. Jefferies, an associate professor pediatric cardiology andadult cardiovascular diseases, is the Director of AdvancedHeart Failure / Cardiomyopathy with The Heart Institute atCincinnati Children’s Hospital Medical Center. He completedhis combined pediatric and adult cardiology training at theBaylor College of Medicine in Houston, Texas at the TexasChildren’s Hospital and the Texas Heart Institute. He hasauthored or co-authored over 100 peer-reviewed manuscriptsand book chapters on cardiomyopathy, cardiovasculargenetics, and adults with congenital heart disease.Al Lane, MDProfessor of Dermatology and Pediatrics, EmeritusStanford UniversityDr. Alfred T. Lane is a Professor of Dermatology andPediatrics (Emeritus) at Stanford University Medical School.Al joined the faculty of Stanford University Medical School in1990 and in 1996 he was promoted to Professor ofDermatology and Pediatrics and became Chair of theDepartment of Dermatology until 2010. Al’s clinical practicehas been focused exclusively to clinical research since 2010.Al currently works with a Stanford research team focusing ondeveloping protein therapy, gene therapy and stem celltherapy for Epidermolysis Bullosa and other genetic skindiseases. He has been concerned about ethical issues intreating children in clinical trials. In the process of preparingfor gene therapy clinical trials, he completed a Masters ofArts in Religious Studies (Spirituality) at Santa ClaraUniversity in 2004 He has tried to focus his education in theareas of moral decision-making in medical care andspecifically on genetic research on children with severe lifethreatening diseases. He currently is the Co-Chair of theEthics Committee of Lucile Packard Children’s Hospital.Anne W. Lucky, MDMedical Director, Cincinnati Children's EB CenterCincinnati Children's HospitalDr. Lucky is the Medical Director of the Cincinnati Children'sEpidermolysis Bullosa Center in Cincinnati, OH. She has hadover 30 years of experience caring for children and adultswith EB. Her training has been in Pediatrics and PediatricDermatology at the Yale University School of Medicine, NewHaven 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 andPediatrics at the University of Cincinnati College of Medicine.
Susan Maksomski, OTR/L, CHTPLATINUM SPONSOROccupational Therapist/Certified Hand TherapistNew York Presbyterian HospitalSusan Maksomski has been working as an OccupationalTherapist/Certified Hand Therapist at the New YorkPresbyterian Hospital for over 16 years. She has worked withchildren suffering from EB for six years in an interdisciplinaryGOLD SPONSORSsetting, as well as individually. Susan has been certified as ahand therapist for ten years specializing in upper extremityrehabilitation for adults and children. She has attended theDEBRA PCC previously and gained significant knowledgefrom patients and families dealing with Epidermolysis Bullosa.She also experienced working with families in the homeenvironment dealing with the day to day struggles of patientcare. Susan has been a lab instructor in splinting at ColumbiaUniversity for the past thirteen years. Currently, she isenrolled in the Masters of Science in OrganizationalLeadership at Quinnipiac University.M. Peter Marinkovich, MDDirector, Blistering Disease ClinicStanford University School of MedicineDr. Marinkovich received his dermatology training at OregonHealth Sciences University, and his research training in thelaboratory of Dr. Robert Burgeson, who discovered type VIISILVER SPONSORcollagen. Dr. Marinkovich's early work led to thecharacterization of several key basement membranecomponents involved in epidermolysis bullosa, includinglaminin-332 and laminin-311. He later joined the faculty atStanford University and served as an attending in theNational EB Registry at Stanford University and currentlydirects the Stanford Blistering Disease Clinic. Dr.Marinkovich’s NIH funded laboratory has had a longstandingfocus on the development of molecular therapy for variousBRONZE SPONSORSsubtypes of epidermolysis bullosa.Sandra Oehlke, RN, CPNP-PC, DNC, DCNP, CCM, CCRP,CWOCNSkin Integrity Nurse PractitionerChildren’s Hospitals and Clinics of MinnesotaSandra Oehlke has been the Skin Integrity nurse practitionerat Children's Hospitals and Clinics of Minnesota for the past 6years. Prior to her position at Children's she graduated fromWinona State University with her BSN in 1982 and did herclinical years in Rochester MN. She has worked as apediatric nurse at Vanderbilt University Hospital, the U of M,and Ridgeview Medical Center in MN. She was acatastrophic case manager and transplant coordination forUHC as well as an adjunct clinical professor at the College ofSt. Catherine's AD program. In 2002, she received Master ofArts in Nursing at the College of St. Catherine. She thenbecame a dermatology nurse practitioner and clinicalresearch professional at a pediatric dermatology Clinic. Whenshe joined Children's in 2008 she did her WOCN training atthe University of Texas, M.D. Anderson Cancer ResearchCenter (WOCNEP). Sandra is involved in severalprofessional organizations on the regional and national level.She is married with a son and daughter in college.EXHIBITORS
Amy S. Paller, MDChair, Department of DermatologyNorthwestern University Feinberg School of MedicineAmy Paller, MS, MD is the Walter J. Hamlin Chair andProfessor of Dermatology, Professor of Pediatrics, andPrincipal Investigator of the NIH-funded Skin DiseaseResearch Center at Northwestern University’s FeinbergSchool of Medicine. She received her undergraduate andgraduate degrees from Brown University and her medicaldegree from Stanford University. Dr. Paller completedresidency training in both Pediatrics and Dermatology atNorthwestern University and her postdoctoral researchfellowship at the University of North Carolina. She served asChief of Pediatric Dermatology at Northwestern’s Children’sHospital beginning in 1988 and became Chair of Dermatologyin 2004. She has been President of the Society for PediatricDermatology, Society for Investigative Dermatology, andWomen's Dermatologic Society. Dr. Paller is an NIH-fundedinvestigator who has served on the NIH Board of ScientificCounselors (NIAMS). Her clinical interests focus on geneticdisorders of the skin, including epidermolysis bullosa, andcutaneous immunologic disorders in children. Read More.Ellen G. Pfendner, PhDDirector, EBDx ProgramGeneDx Inc. Gaithersburg MDEllen Pfendner received her BS from Simmons College andPhD from the University of Pennsylvania. After teaching atthe University of Pennsylvania, she managed the MolecularDiagnosis Laboratory at the Hospital of the University ofPennsylvania. Dr. Pfendner has established CLIA certifiedmolecular genetic testing laboratories at the Albert EinsteinMedical Center and at Thomas Jefferson University whereshe developed the clinical genetic testing service with Dr.Jouni Uitto. For the last 9 years Dr. Pfendner has directed theEB genetic testing program at GeneDx. Dr. Pfendner hasworked EB for 19 years and is the author of numerousscientific articles on the genetics of EB.Jennifer Phillips, MS, RD, LDRegistered DietitianCincinnati Children's Hospital Medical CenterJennifer Phillips is a Clinical Dietitian at Cincinnati Children'sHospital Medical Center. She has 10 years of clinicalpediatric experience. Jennifer is currently practicing in thePediatric Intensive Care Unit and Epidermolysis BullosaCenter. She has been an EB Center dietitian for the last 7years. Jennifer Phillips received her Bachelor of Science andMaster of Science degrees from Marshall University.
Mark P. Popenhagen, PsyDPsychology DirectorPCH Complex Chronic Pain ProgramPhoenix Children's HospitalDr. Mark Popenhagen is a psychologist with clinicalspecializations in Pediatric Psychology, Pain Management,and Palliative Care. He received his doctoral degree at theMinnesota School of Professional Psychology. Aftercompleting his fellowship in Pediatric Psychology at St. JudeChildren’s Research Hospital in Memphis, Tennessee, hecontinued on as their pain psychologist. He went on topursue further pain management and palliative careopportunities at the University of Colorado/Children’s Hospitalof Denver and Loyola University Medical Center/RonaldMcDonald Children’s Hospital. He joined Phoenix Children'sHospital in 2013, and is serving as the Program Director ofthe Complex Chronic Pain Program.Carol Schober-Flores, RN, BSN, CWSChildren's Hospital Colorado EB CenterCarol Schober-Flores has worked in Dermatology for 25 yearsand started working with patients diagnosed with EB 20 yearsago. She began working with the EB population at UniversityHospital, but moved with Dermatology to the Children’sHospital Colorado to maintain the continuity of care for thesepatients. Carol has her Bachelor’s of Science in Nursing andis a Clinical Wound Specialist, but finds that her true passionlies in working with individuals diagnosed with EB and theirfamily members. She has assisted in the education of EBboth through formal and informal lectures and withpublications. Her job as a wound care nurse for these familiesis to assist them with education regarding their child’s skindisorder, teaching them wound care strategies, obtainingwound supplies and assisting with home care nursingsupport. She is also a liaison for them when questions orproblems arise.Carrie ShotwellOccupational TherapistCincinnati Children's Hospital Medical CenterCarrie Shotwell is an occupational therapist and a member ofthe EB Center at Cincinnati Children's Hospital. She also hasexperience in pediatric hand therapy, development, andfeeding disorders. She has presented on the subject of therole of therapy in children with EB at the debra Patient Careconferences in Cincinnati, Orlando, and Toronto.Kristy Steinau, PT, DPTPhysical TherapistCincinnati Children's Hospital Medical CenterKristy Steinau has over seventeen years of experience as apediatric physical therapist at Cincinnati Children’s HospitalMedical Center. During this time, she has spent sixteen yearstreating and working with patients who have EB. She wasintroduced to patients with EB by providing whirlpools anddressing changes. She has been a member of the EB centerteam since its induction. In 2008, she presented,“Epidermolysis Bullosa and hydrotherapy, both sedated andnon-sedated” for DEBRA Chile. She has also presentednationally and internationally on Physical Therapy for patientswith EB in Cincinnati, Orlando, and Toronto.
Lisa Taylor, RN, WCNPediatric DermatologyLucile Packard Children’s Hospital at StanfordLisa Taylor has been passionate about pediatric dermatologyfor the past nine years. She is honored to work with theamazing families and dedicated physicians who are devotedto better skin treatments for Epidermolysis Bullosa. LisaTaylor has a background in neonatal ICU and has spent 20years working with pediatric oncology.Jakub Tolar, MD, PhDProfessor and Director, Stem Cell InstituteUniversity of MinnesotaDr. Jakub Tolar is currently a practicing physician, professor inPediatric Blood and Marrow Transplantation, and the Directorof Stem Cell Institute at the University of Minnesota. Dr. Tolarcombines his passion for patient care with his laboratoryresearch in a search for better, safer treatments. He iscurrently pursuing the possibility of curing genetic disordersby removing, correcting, and reintroducing patients’ cells inthe hope that these cells will provide an effective treatmentwithout the negative effects of unrelated donortransplantation.Search
The 2014 PCC Kids RoomPLATINUM SPONSORGOLD SPONSORSThe PCC Kids Room, sponsored by Hollister Wound Care, was filled with toys, books,games, music, movies, and arts & crafts. There was something for everyone. We werejoined by several Special Guests who came to give performances, including AnimalTales, Super Science, Matthew Moon and more.The PCC Kids Room is located close to conference sessions, and children must besigned in and out by a parent or guardian. Children under 5 years old must beaccompanied by an adult.SILVER SPONSORBRONZE SPONSORSEXHIBITORS
DEBRA 2014 PATIENT CARE CONFERENCEJuly 30 – August 2, 2014GOVERNOR’S BALLROOM NORTHWEDNESDAY, JULY 3012:00pm – 4:00pm4:00pm – 4:15pm4:15pm – 5:00pm5:00pm – 5:30pm5:30pm – 8:00pmRegistrationWelcome and Opening RemarksBrett Kopelan, Executive Director debra of AmericaBlood and Marrow Transplantation for Severe EBJakub Tolar, MD, PhDEars, Nose and Throat Ailments in Children with Epidermolysis BullosaRavi Elluru, MD, PhDWelcome Dinner ReceptionTHURSDAY, JULY 318:00am – 9:30am10:00am – 10:35am10:35am – 11:10am11:10am – 11:45am11:45am – 12:00pm12:00pm – 12:35pm12:35pm – 1:00pm1:00pm – 5:30pm6:00pm – 7:30pmBreakfastOverview of EBAnne W. Lucky, MDBlenderized Foods by GTJennifer Phillips, MS, RD, LDAnemia and bone health in EBAnna L. Bruckner, MDBreakEffectiveness of SD-101 in Treating Blisters and Lesions in Patients withEpidermolysis Bullosa - Results of a Phase 2b/3 Randomized Placebo ControlledTrialRobert Ryan, PhDFree TimeFamily Field TripGeneral Jackson ShowboatDinnerFRIDAY, AUGUST 18:00am – 9:30am10:00am – 10:45am10:45am – 11:45am11:45am – 12:00pm12:00pm – 12:35pm12:35pm – 1:10pm1:10pm – 2:10pm2:10pm – 2:30pm2:30pm – 3:00pm3:00pm – 3:35pmBreakfastGenetics and Genetic Testing for Epidermolysis BullosaEllen G. Pfendner, PhDWound Care PanelPanel Chair: Sandra Oehlke, RN, CPNP-PC, DNC, DCNP, CCM, CCRP, CWOCNKim Hazelbaker, RNII, BSN, CPN; Carol Schober-Flores, RN, BSN, CWS; LisaTaylor, RN, WCN; Jean Whalen, RNIII, BSN, CPNSponsor Session: National RehabPrinciples of Biomedical Ethics Related to EB: Do Risks Outweigh PossibleRewards?Al Lane, MDProtections Afforded by the Americans with Disabilities ActSusan K. DeClercqLunchFree TimeStep by Step Through The Clinical Trial ProcessLawrence Charnas, MD, PhDGene therapy and micro needle based protein therapy for RDEBM. Peter Marinkovich, MD
3:35pm – 3:50pm3:50pm – 4:25pm4:25pm – 5:00pm5:00pm – 5:30pm5:30pm – 7:00pm7:30pm – 9:00pmBreakOral Care for Patients with Epidermolysis BullosaMark L. Cannon, DDSMeasuring and improving patient-reported hand function in epidermolysisbullosaRoger Cornwall, MDGroup PhotoDinnerMovie ScreeningButterfly GirlSATURDAY, AUGUST 28:00am – 9:30am9:30am – 10:00am10:00am – 10:35am10:35am – 11:10am11:10am – 11:45pm11:45am – 12:00pm12:00pm – 12:35pm12:35pm – 1:10pm1:10pm – 2:10pm2:10pm – 3:00pm3:00pm – 3:35pm3:35pm – 4:10pm4:10pm – 4:45pm4:45pm – 5:00pm5:00pm – 5:35pm5:35pm – 5:45pm6:00pm – 7:30pmBreakfastResearch Updates on EB SimplexSharon A. Glick, MDDevelopment of a genetically modified autologous dermal fibroblast for thetreatment of RDEBJohn MaslowskiTreating Pain and Itch in EBKenneth R. Goldschneider, MD, FAAPBut I Didn't Even Touch You Yet. Coping with Anticipatory AnxietyMark P. Popenhagen, PsyDSponsor Session: HollisterTopicalsAmy S. Paller, MDGuts and Butts – What the EB patient needs to knowJason Frischer, MDLunchFree TimeDevelopment of recombinant collagen 7 for the treatment of DEBMarcia Sellos-Moura, PhDCardiovascular Findings in RDEBJohn Lynn Jefferies, MD, MPH, FACC, FAHAThe Ins and Outs of Gastrointestinal Issues in EBMichael K. Farrell, MDBreakInsurance Advocacy PanelBrett Kopelan, Joseph Murray, Andrew TavaniClosing RemarksBrett Kopelan, Executive Director debra of AmericaDinnerBREAKOUT SESSIONS – PRESIDENTIAL BOARDROOM AFRIDAY, AUGUST 13:00pm – 4:00pmOccupational Therapy and Physical Therapy for the patient with EBPanel Chair: Kristy Steinau, PT, DPTKaycie Artus; Marita Black, PT, DPT, PCS; Susan Maksomski, OTR/L, CHT;Carrie ShotwellSATURDAY, AUGUST 210:00am – 10:35amCamp Options for children with Epidermolysis BullosaKaycie Artus; John C. Browning, MD
Dystrophic Epidermolysis Bullosa Research Association of AmericaDEBRA OF AMERICA TO HOST 7TH BIENNIAL PATIENT CARE CONFERENCE FOR PEOPLE WITHEPIDERMOLYSIS BULLOSA AND MEDICAL EXPERTS FROM JULY 30 TO AUGUST 2 IN NASHVILLE, TENNESSEEFour-Day Conference For People With Rare Genetic DisorderNEW YORK, NY (April 14, 2014) — debra of America will be hosting the biennial 2014 debra Patient Care Conference (PCC) for childrenand families affected by Epidermolysis Bullosa (EB), a rare, debilitating, and fatal genetic connective tissue disorder that affects 1 out ofevery 20,000 live births in the United States. Because their skin is so fragile, they are often known as ‘Butterfly Children.’ The conferenceruns July 30 to August 2, 2014 at the Gaylord Opryland Resort and Convention Center in Nashville, Tennessee.The debra Patient Care Conference will bring together people with Epidermolysis Bullosa, their families, caregivers, advocates, leading medicalexperts, sponsors, and exhibitors from across the United States. debra of America’s EB Nurse Educator, Geri Kelly from CincinnatiChildren’s Hospital Medical Center, will be available to meet and answer questions. The conference is currently at capacity, which sets aconference record with almost 500 people registered to attend. Sponsors include; Hollister Wound Care (Platinum), Mölnlycke Health Care(Gold), National Rehab (Gold), Scioderm (Silver), Edgepark Medical Supplies (Bronze), and Ferris Mfg. Corp. (Bronze).For sponsorship opportunities, exhibitor booth/signage, and more, visit: debra.org/PCC2014Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder in which people do not produce a vital protein which allows theirskin to adhere to itself. The most prominent symptom is skin so fragile that even the slightest friction can cause severe blistering and soresinside and outside their bodies. EB afflicts both genders and all racial and ethnic backgrounds equally. That means taking off a shirt or ahug from a loved one is incredibly painful and causes the skin to peel away. There is no cure or treatment for EB; pain management,wound care, and preventative bandaging are the only options.For many families, the debra Patient Care Conference is their only opportunity to hear talks and meet with members of the medical professionwho have developed expertise in particular areas of EB care and research. They can also speak with bandage manufacturers and distributorsabout new wound care products. Attendees will enjoy a variety of activities including, the Kids Room for younger guests, interactivesessions like the Teen Roundtable and EB on Social Media, time to socialize with new and old friends, and the exciting Family Field Trip.Brett Kopelan, debra of America’s Executive Director and father to Rafi, a six-year-old girl with EB says, “The record attendance we are havingthis year clearly demonstrates how important our Patient Care Conference is to the families that live with EB. Not only will the conference provide an opportunity tohear about the tremendous progress researchers are making toward a treatment, but it will also allow for an opportunity to fun. The one hundred plus childrenattending will be able to socialize and play games in one of our three fully staffed playrooms, while their parents are able to meet face to face with the professionalcommunity dedicated to caring for those with EB and finding a cure for what we call, ‘the worst disease you’ve never heard of.’”ABOUT DEBRA OF AMERICAThe Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) founded in 1980, is headquartered in NewYork City, and is the only national nonprofit that supports the research for treatments and a cure, while providing services and programs tothose who suffer from Epidermolysis Bullosa (EB). debra.org# # #FOR MEDIA COVERAGECasey Fitzpatrick, Communications & Events Director: 212-868-1573 x105, casey@debra.orgWHAT IS EB? Epidermolysis Bullosa (EB) is a rare genetic connective tissue disorder in which children do not produce a vitalprotein which allows their skin to adhere to itself. Because their skin is so fragile, they are often known as ‘Butterfly Children.’ EBafflicts both genders and all racial and ethnic backgrounds equally. The most well-known and prominent manifestation of EB isblistering or tearing of the skin from any friction. That means taking off a shirt or a hug is incredibly painful and causes the skin topeel away. Imagine your child suffering from a disease where more than 70% of their body is covered in open sores and blisters.BOARD OF TRUSTEESLeslie Rader, President Richard Gallagher, Vice President J Alec Alexander, Treasurer William Cornman, Secretary Faith Daniels, President EmeritusKathleen Brown Angela Christiano, Ph.D. Thomas Gillespie Frank Kacmarsky Robert Meirowitz, M.D. Charlee MillerThomas Misisco Robert Ryan, M.D. Jeanne Rohm Daniel Siegel, M.D. Jouni Uitto, M.D., Ph.D. James Wetrich Sonya WilanderBrett Kopelan, M.A., Executive DirectorWE ARE A 501(c)(3) TAX-EXEMPT NONPROFITdebra of America 75 Broad Street, Suite 300 New York, NY 10004 (P) 212-868-1573 (F) 212-868-9296 debra.org
Stanford University Dr. Alfred T. Lane is a Professor of Dermatology and Pediatrics (Emeritus) at Stanford University Medical School. Al joined the faculty of Stanford University Medical School in 1990 and in 1996 he was promoted to Professor of Dermatology and Pediatrics and became Chair of the Department of Dermatology until 2010.
