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debra of America is a national nonprofit organization dedicated to improving the lives of those impacted by Epidermolysis Bullosa (EB) — “The Worst Disease You’ve Never Heard Of.”

We integrate direct-to-patient programs and services, education, advocacy, close partnership with treatment developers, and research funding to foster meaningful change for those living with EB.

We envision a future where the burdens of EB are eased and eradicated, empowering those affected to lead lives free from the challenges of EB.

Epidermolysis Bullosa (EB) is a group of rare disorders caused by a mutation in one of 18 genes. People with EB share the lifelong challenge of extremely fragile skin that blisters and tears from minor friction or trauma. The list of medical complications EB causes may be long and often requires multiple interventions from a range of medical specialists. 

debra of America was founded in 1980 by Arlene Pessar and her son, Eric Lopez, who was born with EB. Eric testified before Congress six times during the 1980s urging federal appropriations for research and legislation, which led to the creation of five clinical centers and a national registry of patients.

Frustrated with the lack of available medical information on the disease, Arlene and Eric wrote countless letters to nursing journals seeking information about EB. debra of America was founded to fill the significant gaps in knowledge about the cause, diagnosis, treatment, and cure for the rare disease. After writing the first informational materials on EB, Arlene and Eric identified regional representatives to promote awareness and disseminate this information. Initial television, radio, and newspaper publicity drew attention to debra of America’s mission and in the organization’s inaugural year, the first newsletter was mailed to 100 EB families nationwide.

The family's valiant efforts caught the attention of President Ronald Reagan. On October 11, 1984, President Reagan and the 98th Congress of the United States of America signed the Joint Resolution approving the first-ever “National Epidermolysis Bullosa Awareness Week.” 

Since 1980, debra of America has remained committed to its mission to fund research toward a cure, while responding to the increased need to provide direct services to patients and their families.

• Every year, we ship an average of over 115,000 wound care supplies to more than 400 families in over 42 states. Unfortunately, many families are underinsured or don't have coverage for these medically necessary items that could cost more than $80,000 per month. 
• On average, our EB Nurse supports more than 130 unique families per month, providing expert advice and education on EB care and management.
• When surveyed:
  • 93% of program participants reported an improvement in health over the year for their loved one with EB due to our programs and services.
  • 100% of program participants said that the New Family Advocate Program reduced their stress.
  • 94% of program participants said that our EB Nurse allowed them to better care for themselves or their loved one with EB.
  • 95% or program participants said that the Wound Care Distribution Program either provided support during or prevented a crisis.
• Our advocacy work led to the inclusion of EB in the list of eligible diseases for research funding through the Department of Defense's Congressionally Directed Medical Research Program, allocating $300 million to grants for research projects in EB and other diseases.
• In 2023, our work led to the groundbreaking U.S. FDA approval of the first and second treatment for Epidermolysis Bullosa (EB).

See our Annual Reports & Financial Statements

Prior to his rare disease work, Brett was an accomplished entrepreneur, starting three companies, raising more than $30 million in venture financing, where he led business development and marketing. He has a graduate degree from Columbia University and an undergraduate degree from New York University.      

Brett currently serves as: Chairman of the Board of Directors of the Foundation for Cell & Gene Medicine, member of the Board of Directors of the Alliance for Regenerative Medicine, The Assistance Fund, and as well as the Wound Care Collaborative Community. Brett formerly served as President of the Board of Directors of DEBRA International (a consortium of 55 nongovernmental organizations dedicated to curing EB), Vice President and Secretary of a 52-year-old financial services firm’s Board of Directors, as well as both the Chairman of the Board of Directors, and the Treasurer of the National Organization for Rare Disorders (NORD) and as President of the Board of Directors of the Coalition of Skin Diseases. 

In addition to working as the EB Nurse Educator for debra, Catherine is a passionate and widely recognized Pediatric Nurse Practitioner and Senior Instructor with Distinction for the Department of Pediatrics at the University of Colorado. She provides direct patient care in the Special Care Clinic and the EB Multi-disciplinary Clinic at Children’s Hospital Colorado (CHCO). She is also the CHCO liaison for school nurses caring for students with medical complexity and was recognized as the CASN School Nurse Advocate of the Year in 2018.    

Catherine’s commitment to the EB Community extends beyond her professional duties. She serves as the Volunteer Medical Director for Camp Spirit Colorado, a winter adventure camp dedicated to children with RDEB, and currently serves as a board member of the Butterfly Children Fund. Catherine is a proud wife and mother of three beautiful children and has a sweet family dog named Bode. When not working, she enjoys spending time with her family hiking, skiing, relaxing in the hot tub, watching Auburn football, and working in her flower garden.  

Currently serving as the Community Engagement Director for debra of America, Heather plays a pivotal role in advocating for the Epidermolysis Bullosa (EB) Community. In this capacity, she engages with government groups and industry partners to ensure that the patient voice is heard in crucial discussions and decisions. Her dedication to fostering collaboration between various stakeholders underscores her commitment to improving the lives of those impacted by EB.

In addition to her clinical work, Heather has made significant contributions to the field of Epidermolysis Bullosa (EB) research. Over the past decade, she co-founded two non-profit organizations, EB Research Partnership and Heal EB, aimed at funding research and raising awareness for this rare genetic disorder. In her role, she led the establishment of the Scientific Advisory Board, contributed to the development of research grant guidelines, and served on the Board of Directors and Research Review Committee.

Heather's passion for making a difference extends beyond the boardroom and clinic. She has dedicated her time to organizing annual fundraisers and community education events, furthering the mission of both organizations. Residing in Southern Oregon with her husband and son, Heather's personal connection to EB, as her son was born with Recessive Dystrophic Epidermolysis Bullosa, drives her unwavering commitment to finding treatments and improving the lives of those affected by this challenging condition.

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