About
National Epidermolysis Bullosa
Awareness Week

The two primary EB-supportive nonprofit organizations, DebRA of America and EB Medical Research Foundation, were founded in 1979 and 1991 respectively. In 1984 and 1986, members of the EB community brought together by these organizations were successful in convincing Senator Mark Hatfield of Oregon to sponsor Bill SJ.RES.201 for National Epidermolysis Bullosa Awareness Week. Congressman Benjamin A. Gilman of New York sponsored House Bill HJ.RES.565, making it a joint resolution. National EB Awareness Week became Public Law 98-463, and awareness week was celebrated officially for the first time.

In 1986, Senator Hatfield again introduced a Bill before the Senate for National EB Awareness Week, SJ.RES.245. A House Bill was introduced by Congressman Stephen J. Solarz of New York, and once again, awareness week became law, this time Public Law 99-459.

In both of these cases, President Ronald Reagan issued proclamations in support of EB awareness. President Reagan said in Proclamation 5283 on November 26, 1984, "Now, Therefore, I, Ronald Reagan, President of the United States of America, do hereby proclaim the week of November 25 through December 1, 1984, as National Epidermolysis Bullosa Awareness Week. I urge the people of the United States and educational, philanthropic, scientific, medical and health care organizations and professionals to observe this week with appropriate programs, ceremonies, and activities."

On December 2, 1986, in Proclamation 5581, President Reagan went on to say, "The disease not only disables people physically and emotionally, it also places a severe financial burden on their families. Basic research is just beginning to reveal the underlying causes of epidermolysis bullosa. Recent developments in biology, biochemistry, pathology, immunology, and genetics are all being employed to study the disease. The main objectives are to understand the basic mechanisms that lead to this distressing disorder and to develop therapies directed at correcting these effects…. I call upon all Americans to participate in activities designed to heighten awareness of the plight of Epidermolysis Bullosa sufferers."

It was a ponderous process in the 1980's to put forth such an effort each year. While there were more attempts, it was not until 2005 that the EB community found success on Capitol Hill again. However, it had become possible for such legislation to be enacted in perpetuity.

Grace Catherine Peshkur was born on March 29, 2002, and was diagnosed with Recessive Dystrophic Epidermolysis Bullosa. Her parents and grandparents approached Congressman Timothy Bishop of New York's First District, asking him to help promote awareness. Congressman Bishop sponsored H.RES.335, to reserve the last week of October every year as National Epidermolysis Bullosa Awareness Week. He introduced the Bill with Congressman Peter King of New York, Chairman of the House Homeland Security Committee, on June 21, 2005. Senator Charles E. Schumer and Senator Hillary Rodham Clinton of New York presented S.RES.180 as a concurrent resolution on June 23, 2005.

The legislation was slow to move, and the EB community watched closely to see its progress. One person watching was the EB Relay's Founder, Gena Gruschovnik. She contacted the Peshkur family and DebRA of America and asked if they would accept her help. Gena then drafted press releases for DebRA of America and the EB Medical Research Foundation, describing the EB community's legislative effort, and distributed them in 2005. She did this again in 2006.

Because she is a resident of Canada and does not currently have legislative representation, Gena requested the assistance of five Americans who also have a personal connection with this disease:

Allyson Anderson
Robin Eckworth
Shirley Jones
Dennise Joseph
Barbara Stowe

These wonderful, energetic women worked closely with Gena, writing letters to each and every Member of Congress, and each and every Senator across the land! Barbara, who lives in Virginia, made numerous trips to Capitol Hill to hand-deliver letters from both nonprofit organizations, and to legislators who were in a decision-making capacity on committees. Madeline Weiner, longtime EB nurse, joined the group of volunteers in the final push.

All the while, Gena remained in close contact with Don Peshkur, Grace's grandfather, and the two nonprofits, to keep them apprised of activities. Gena also reviewed the past legislation, and additional efforts were made by the group to convince 1984 and 1986 co-sponsors (quite a few remained active in government) to come on-board.

In September 2005, the Senate Bill passed. This was announced on a video in competition for a project called "Seeds of Tolerance" for Current TV, produced by Joseph Galata of Reno, Nevada. And then, on the very last day of the 109th Congress, in the wee morning hours of about 2:00 a.m., the House Bill was passed by unanimous decision.

So, you see, this did not come easy! It is with deep pride now that we step forward and begin to celebrate the first of many annual awareness weeks. We cannot afford to let it pass by quietly. This is our best opportunity each year to promote awareness, show our legislators that their efforts were worthy of our own, and bring our best to community service. Members of the media and prospective sponsors are encouraged to contact the Event Organizer at gena@ebrelay.org.