ibdcure.org | ibdsc | breaking news | HE HAS CROHN'S AND TWO CRUSADES 03-06-02

Breaking News: March 6, 2002

The Star Ledger -- New Jersey Section

Published: Wednesday, March 6, 2002 / Page 13

BY BOB BRAUN/STAFF WRITER FOR THE STAR LEDGER

HE HAS CROHN'S AND TWO CRUSADES: One is a stamp drive, the other a lawsuit

He is reminiscent of a very young Jerry Lewis, both in looks and in his nearly manic display of energy -- but this kid isn't working a room for laughs.

"Injustice," says Gideon Sofer. "I'm fighting for those people who face injustices because they are disabled."

It's a measure of his commitment that he now speaks almost nonstop for more than an hour, despite mouth ulcers that bring a wince with every word.

He's 17, but looks much younger, and that's also a sign of his problem. Gideon has Crohn's disease, an intestinal condition that doesn't allow him to digest normally. He's 5-4 and weighs 115 pounds, but only recently has his weight topped 100.

This is an ugly, frequently embarrassing condition that robs many of its victims of the ability to live a normal life, and saps them of their strength.

"But, emotionally, I'm motivated," says Gideon. "I'm often physically wiped out, but I usually come out of an episode eager to do more."

He has a lot of time, because he doesn't often attend school. From his home in Highland Park, Gideon established the IBD Stamp Campaign, with IBD standing for "inflammatory bowel disease," of which Crohn's is one.

The point of that is to have the U.S. Postal Service issue a stamp about IBD. To raise awareness.

"You need awareness before you can raise money," says Gideon. "Without money, you can't find a cure."

Gideon has enlisted the help of Rep. Frank Pallone (D-6th Dist.), who's pushing the Citizens' Stamp Advisory Committee to recommend a commemorative issue, they way it has recommended stamps for breast and prostate cancers and diabetes.

In a few weeks, Gideon expects to testify about Crohn's before Congress, and he's writing the text of a joint resolution Pallone promised to introduce backing the stamp.

"I'm building a lot of support," says the young man, whose Web site (ibdcure.org) has helped generate 4,000 signatures in support of the stamp.

But the stamp campaign is not Gideon Sofer's only crusade. In the past, he fought health insurance companies that he says failed to pay for growth hormone he needed.

And now he has taken on the Highland Park school district, contending it failed to provide him with an appropriate level of education in light of his disability.

"I think what I'm doing will help other disabled students," he says.

From his carefully organized files, Gideon yanks a letter from the New York regional office of the U.S. Department of Education. It's obvious he's especially proud of this one, a sort of David-Goliath trophy.

Gideon says he filed a formal complaint with the federal government -- and the government didn't reject it out of hand as he suspected it might. Instead, it notified him it would pursue "complaint resolution activities" to ensure Sofer's rights.

Gideon's complaints have to do with his ability to participate in extracurricular activities as a home-tutored student; the coordination of work between home tutors and the regular classroom teachers, and the district's failure to provide a home tutor.

This must sting Highland Park, a little community that sits north of New Brunswick, and counts many Rutgers University faculty as its residents -- and many faculty children as its public school students.

"We've always been a sensitive school district," says Marylu Simon, its superintendent. "We do everything -- and more, really -- for children with special needs."

While Gideon can criticize the school district, Simon says the district can't answer because it can't say anything about Gideon.

"I can say we haven't violated federal law," she says.

But for Gideon, it's the crusade that counts.

He says he survived some serious exacerbations of his disease and, to him, that means he has to keep fighting.

"I didn't choose to have this problem," says Gideon Sofer. "But I can choose what I do in reaction to it."

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