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Gideon Sofer all smiles at the Child Health Day event--Courtesy: Tonia Moore

In October of 2000, Gideon Sofer and several other kids from the Central New Jersey area participated in a Child Health Day event which took place at Robert-Wood Johnson University Hospital (RWJUH), in New Brunswick, NJ.

At the beginning of the event, Ted Kennedy, Jr. gave a keynote speech about his childhood health battle with Cancer. Ted Kennedy spoke of all the wondrous courage he had at the age of 16, to overcome cancer and a partial leg amputation. He said that many people look at him as an "inspirational" person, and he did not want to be seen as one. He wanted to just be seen as a normal 16-year-old. He is now a big-time child health lawyer in Connecticut.

Gideon and two other kids then gave speeches regarding their illnesses. One girl explained she was in a motor vehicle accident, and RWJUH basically "fixed her up." Another spoke of the consistent medical attention that was given to her by RWJUH for her condition, Cystic Fibrosis. That girl was also an all-star ice skater.

"Mean" Jean alongside Gideon at the Adolescent booth at the Child Health Day Event

Gideon then spoke of his condition, Crohn's disease, and explained how RWJUH basically saved his life. Gideon knows the hospital very well after 10+ hospitalizations there in recent years. He applauded the outstanding efforts and care of the adolescent nurses, especially "mean Jean." He liked to joke around with the nurses, and there was never anyone more ready to joke with him than Jean was.

He then spoke of his persistent efforts to get the public to educate themselves on IBD, and what he's doing. He gave his Campaign information cards to many of the hundreds of kids who attended the event. He and his friends walked around for the late part of the afternoon collecting approximately 200 signatures from people of all ages, races, etc.

Gideon was interviewed by ABC's Radio Disney--a Radio Station for youngsters in the Tri-State area--for his efforts to try and improve the lives of people with IBD.

Gideon met Ted Kennedy, Jr., Congressman Frank Pallone, Jr., and many others at the health event. He was delighted to meet the people he met, many of which he still keeps in contact with today.

He would like to thank: Tonia Moore and Co. for coming out with all of her friends, Donna Riggi, Patricia Downs, Bruce Williams of the Celegene Corp., Ruth & Ginny, Ivy Simoff, Laura Garofrano, "Mean" Jean and Co.,his doctors, and his personal friends for making it a very special event. He would especially like to thank Angela Moore for writing the below article which gained Gideon and the Campaign national media coverage and support over the internet.

The entire event was truly one to remember.

Gideon's Stampede

A teen embarks on a grassroots campaign to commission a postage stamp to raise awareness for Crohn's disease

By Angela Moore

Gideon Sofer appeared to be in his element last September during Child Health Day, an event to raise awareness for children's health issues at Robert Wood Johnson University Hospital (RWJUH) in New Brunswick, N.J. He pressed the flesh with keynote speaker Ted Kennedy Jr., distributed his business card to everyone he met, and accepted a congressional community service award from Rep. Frank Pallone (D, NJ).

At 16, Sofer is already a political player. The bulk of his energy is focused on urging the Citizen's Stamp Advisory Committee (a branch of the U.S. Postal Service) to commission a postage stamp that would raise awareness of Crohn's disease -- a chronic, incurable, inflammatory bowel condition of unknown origin (although there are a few cases where multiple members of one family have Crohn's or similar conditions). There are over a million cases of Crohn's disease worldwide.

"For there to be intensified research there has to be awareness, and that's what pushed me with the stamp," says Sofer, who was born with the condition.. "If there's awareness there is political pressure to fund more research, and this leads to a cure."

If There's a Seinfeld Stamp. . .

There have been awareness stamps for AIDS, breast cancer, and prostate cancer -- as well as ballet, Alfred Hitchcock, and hospice care. According to the US Postal Service, a stamp subject will be considered as long as it involves the United States or American events, an historic event or anniversary, or be an issue or theme of widespread national appeal and significance.

Sofer, an avid stamp collector, got the idea for a Crohn's stamp four years ago during one of his numerous hospital stays at RWJUH -- the time when he finally realized that Crohn's disease was the cause of his painful symptoms..

"I was in my hospital bed and I had been diagnosed with something I had never even heard of," says Sofer. "I was thinking about my stamp collection and thought maybe I could convince them to issue a Crohn's stamp."

Sofer wrote to his federal elected officials shortly after and received letters of support for his campaign. He befriended Pallone, who not only sent a letter to the committee, but also said he would introduce a concurrent resolution in the US House urging the committee to approve the stamp, and offered Sofer a chance to help draft the resolution.

"He has a good understanding of the political process," Pallone said during the RWJUH event. "Something like 99% of stamp requests are denied, but this deserves a stamp. If he continues with this grassroots effort, he'll be successful."

Sofer, So Good

In the meantime, Sofer concentrates on his schoolwork, but he says his illness and hospital stays -- including one where he had 11 centimeters of his intestine removed -- have made it difficult to keep up. He has been through the gamut of medications, including the controversial thalidomide, a drug that was originally used to combat morning sickness but then was banned after it was linked to thousands of birth defects in babies born in the late '50s and early '60s.

Gideon Sofer with the man who saved his life: Dr. Richard Strauss, Gideon's Crohn's doctor

Sofer says the drug -- which was reintroduced a leprosy drug in 1998 and now is used experimentally to treat a number of conditions -- was a blessing for him, particularly because it relieved the mouth ulcers symptomatic of Crohn's that make eating and drinking extremely painful.

"That was the best time of my life," says Sofer. "I was able to eat and taste food for the first time and enjoy it. I got to drink orange juice and lemonade. My favorite foods were gyros, quesadillas, lasagna, and Thai food."

But after several months on the powerful drug, Sofer developed numbness in his limbs -- an indication of nerve damage -- and had to discontinue use.

The ulcers returned within a few weeks. Other Crohn's symptoms returned, including diarrhea, abdominal pain, rectal bleeding, high fever, weight loss, and lack of appetite. Sofer was put back on steroid therapy and was soon hospitalized again.

He is now taking Remicade, which is also used to treat rheumatoid arthritis.. The drug is working well so far, he said, but if it loses its effectiveness he says he will consider clinical trials of drugs awaiting approval by the Food and Drug Administration (FDA). "I definitely want to try all of the options out there," he says, adding that he believes more treatment options will come from the heightened awareness a stamp could bring.

"Nobody knows how much longer they're going to be on this planet," says Sofer. "I started to realize that as my Crohn's progressed and I was knocking off the options one by one -- that there might be no more drugs to try. I'm at peace with that though, as long as I do my best to get this thing conquered."

Published: Nov. 14, 2000 @ Wemedia.org

Additional photos from Child Health Day (click snapshots to enlarge):

An anonymous minor educates himself on IBD and the IBDSC

Gideon Sofer is given a US House of Representatives Community Service Award by Congressman Frank Pallone, Jr.

Left to Right: Rep. Frank Pallone, Jr., Gideon Sofer, Patricia Downs

Gideon, lost in existential thought when being interviewed by Radio Disney

Gideon educates other kids on IBD and the IBDSC

Gideon poses for a shot with Ted Kennedy, Jr.

Visit our Archives Section for MORE photos from Child Health Day!

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