Among the many unforgettable moments at Expo ’19 was when dermatologist Jon M. Hanifin, MD; nurse practitioner Susan Tofte, RN, MS, FNP; and lifelong eczema warrior Irene Crosby took the stage on Saturday, July 20, 2019, for the Founders’ Fireside Chat in celebration of the NEA’s 30-year anniversary.
Hanifin, Tofte and Crosby founded the National Eczema Association for Science and Education in December, 1988.
Hanifin, an Oregon Health and Sciences University (OHSU) professor of dermatology and world-renowned expert on skin diseases, was serving on the Board of Directors of the nearby National Psoriasis Foundation at the time when his secretary, Crosby — a passionate activist, advocate and volunteer in her community — suggested that people with eczema should have an organization providing the same level of support.
Tofte, a nurse who had worked closely with Hanifin treating eczema patients, agreed.
“We wanted to bring patients and health care professionals together on the same page, with the vision to make this organization a patient advocacy group. There was only a small group of us at the time, but we were determined to give this community a voice,” she said.
The three founders put their heads together and started having meetings in the library of OHSU in Portland, Oregon, where they worked.
Endless hours went into strategizing, fundraising, making phone calls, stuffing envelopes and doing everything they could to get their small grassroots foundation up and running.
“Keep in mind that this was before the internet was around, so we depended on what the doctors and nurses told us,” Crosby noted.
“In order for medical professionals to better understand this disease, they had to know what it was like from the patient’s perspective. We [patients] wanted to speak for ourselves. We needed an opportunity to be heard. As it turns out, we can get people to listen to us, but it takes funding, research and patient involvement.”
NEA eventually relocated its headquarters to Marin County, California, where it remains a small but mighty organization determined to make a difference in the lives of people with eczema.
Even when funding waxed and waned through the years, nothing stood in the way of its commitment to educating patients on proper skincare techniques, establishing support groups around the country and investing in research for a cure.
“I’m proud of the way NEA is forming an ever-increasing emphasis on research. That’s so important, and it’s the reason I’m still doing this,” Hanifin said.
“I’ve been ready to retire several times, but new and exciting things keep happening in the field, and I can’t escape! But in all seriousness, we all need to chip in and put in what we can afford every year to help NEA because research is expensive but fundamental.”
Support NEA in its research endeavors by making a donation today!