A Short History of the National Eczema Association (1997-2008)
By Irene Crosby
NEA Volunteer and Board Member
The National Eczema Association (NEA) began as a small patient support group organized by Dr. Jon Hanifin, a physician and researcher in the Dermatology Department of Oregon Health & Science University in Portland, Oregon. Having served on the Board of Directors for the National Psoriasis Foundation, also in Portland, Dr. Hanifin had learned the value of involving patients in their own care. His field of interest was people with atopic dermatitis, so in 1988 he set aside a generous donation for the development of a national patient support network—and what was then called the Eczema Association for Science and Education was born.
In our first two years, under the leadership of Cheryl Neufeld, a former R.N. hired as NEA’s first Executive Director, we produced a fledgling newsletter called The Advocate, we published two basic information brochures, All About Atopic Dermatitis and AD in Children, and we held the first of several successful fundraisers—a one-day tour of some of Oregon’s finer wineries. In 1990 we also joined the Coalition of Patient Advocates for Skin Disease Research, a group of patient support organizations that works closely with the American Academy of Dermatology and the Society for Investigative Dermatology to advocate on Capitol Hill for increased and continued funding for skin disease research through the National Institutes of Health’s Arthritis, Musculoskeletal and Skin Disease branch. Our participation in this group led to annual appearances at several different medical meetings where we were given the opportunity to share our patient support literature with the attending physicians and researchers. These meetings also allowed us to develop partnerships with pharmaceutical companies, which enabled us to fund many projects we could not have completed with patient donations alone.
In the almost 20 years since then, we have come a long way:
In 1997 we produced a patient survey that continues to be a reference for many physicians and researchers. We also officially added the word “National” to our name, in recognition of our greatly enhanced outreach.
In 2001 we had the privilege of hosting a meeting for the International Society for Atopic Dermatitis, which brought researchers from around the world to Portland, OR. This meeting also gave us the opportunity to hold a one-day patient conference, where the attendees could meet with these amazing physicians and ask questions about anything relating to their AD.
In 2002 we formed an alliance with the National Alopecia Areata Foundation to share office space and expenses and to jointly fund research to investigate the link between atopic dermatitis and alopecia. This involved moving the organization to San Rafael, California, where we remain today.
In 2003 we launched a national campaign to warn of the dangers of smallpox vaccination for people with AD, which received major press coverage and won us the first of several Gold Triangle Awards from the American Academy of Dermatology for excellence in raising dermatologic awareness.
Also in 2003 we held our First Annual Patient Conference in Washington DC. Patients and their families spent three days learning about the latest research findings and medical treatments from clinical and research-based dermatology experts. Patients also had the opportunity to network with other people who face the same AD issues on a daily basis. Subsequent conferences have been held in San Jose, CA, in St. Louis, MO, and once again in Washington DC. Our 2008 Patient Conference will be held in San Diego, CA, in connection with a CME-credited conference for physicians sponsored jointly by NEA and the Rady Children’s Center for Atopic Dermatitis at the University of California San Diego.
Over the past five years we have launched our long-awaited research program. We have offered grants to investigate the nature of itch, staphylococcus infections, and barrier function, and we have funded research into the safety and efficacy of nonsteroidal anti-inflammatory products. This latter research was conducted by researchers with no conflict of interest issues—in other words, they had no connection with the pharmaceutical companies who developed the products. We continue to fund some of these research projects beyond their initial grants and are looking to fund more research as we receive the money to do so.
Over these past five years NEA has also produced three new brochures, a special school packet to help improve the school environment for children with eczema, a much more comprehensive quarterly newsletter, and an improved website. We have also established the Eczema and Skin Education (EASE) Program.
The years we have been in existence have produced an enormous amount of new information on available, innovative treatments, and we are happy that many patients now look to us for advice and answers. But we still have much to do in order to reach our eventual goal of safe, immediate relief of skin affected by this disease.
With the generous assistance of donors large and small, patients and industry partners, and the tireless efforts of eczema researchers around the world, we will continue to be a valuable adjunct to people with eczema and those who care for them.