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<<THE IBDCURE.ORG FOUNDATION INTERNATIONAL>> [RELEASE # BN25052006]
IBDCURE NEWS UPDATE
THE COMPLETE ONLINE VERSION OF THIS RELEASE (WITH PHOTOS) CAN BE ACCESSED AT: http://www.berkeley.edu/news/media/releases/2006/05/24_ibd.shtml
FOR IMMEDIATE RELEASE: WEDNESDAY, MAY 24, 2006
5/24/06 - File #17275
Contact: Yasmin Anwar
(510) 643-7944
STUDENT TO MAKE STAMP PITCH TO U.S. POSTMASTER
UC Berkeley freshman to meet
U.S. postmaster general tomorrow
about stamp to highlight Crohn's disease
BERKELEY, California -- Gideon Sofer didn't ask for a trip to Disneyland or a
shopping spree when he made New Jersey's Make-a-Wish Foundation list
of terminally ill recipients in 2002. Instead, he wished for a
meeting with the U.S. postmaster general.
His goal was a postage stamp to highlight Inflammatory Bowel
Disease, which includes Crohn's disease, a chronic intestinal
disorder that has landed him in the hospital for months at a time
since the age of 12, and led to the removal of nearly half his gut.
To date, there is no known cause or cure for the disease.
Tomorrow, (Thursday, May 25) the 21-year-old avid stamp collector,
who just finished his first semester at the University of
California, Berkeley, will get his wish. He is scheduled to meet
with U.S. Postmaster General John Potter at 11 a.m. (EDT) in
Washington, D.C.
Sofer, who was drawn to UC Berkeley because of its strong disabled
rights movement, acknowledges that a digestive tract disease doesn't
exactly make for ideal dinner table conversation or evoke pretty
visuals for a stamp. But that shouldn't stop it from receiving
serious consideration, he said.
The U.S. Postal Service has issued stamps to raise awareness or
money for breast cancer, AIDS, prostate cancer, organ and tissue
donation, diabetes and sickle cell anemia. So why not Inflammatory
Bowel Disease (IBD)?
"This disease isn't a sexy subject, but it's got to be talked
about," Sofer said. "It's time for the suffering to end."
The opportunity first presented itself to Sofer when he was a New
Jersey high school sophomore whose body was wasting away from the
disease. When the Make-a-Wish Foundation contacted him, he said he'd
call back when he wasn't feeling so lousy.
In the meantime, he thought about asking for a meeting with rock
legend Bruce Springsteen or with actor Michael J. Fox, who has
battled Parkinson's disease. But he needed something that would make
a bigger impact on the lives of IBD sufferers like himself.
Two years later, he figured it out. He wished to see IBD join the
pantheon of medical frontier postage stamps, and to do that, he
needed the approval of the U.S. postmaster general. Thus,
preparations for a meeting began.
Of course, he realizes that meeting the postmaster general doesn't
guarantee a stamp. Of tens of thousands of proposals made each year
to the U.S. Postal Service's Citizens Advisory Stamp Committee -
which counts former UC Berkeley Chancellor Ira Michael Heyman among
its members - only about 20 are accepted. The advisory stamp
committee reviews ideas for new stamps proposed by members of the
public and then recommends subjects and designs to the postmaster
general.
Still, Sofer has garnered plenty of support for his campaign,
including the backing of his New Jersey congressman, U.S. Rep. Frank
Pallone Jr., who recently introduced a resolution urging a
commemorative IBD postage stamp. And through Sofer's IBDCURE
Foundation, he's collected 5,000 signatures in an online petition to
the Citizen's Stamp Advisory Committee in support of the stamp.
"Gideon refuses to be defeated by his Crohn's disease," said Heyman,
a law professor at UC Berkeley's School of Law (Boalt Hall).
"Rather, he is successfully informing the world of its nature in a
persistent, sophisticated and successful way."
There are regular commemorative postage stamps, which raise
awareness of an issue, and semipostal stamps, whose sales generate
funds for research or charity. Naturally, Sofer would prefer a
semipostal IBD stamp, but would be happy with either.
Not to be confused with Irritable Bowel Syndrome, Inflammatory Bowel
Disease, which includes Crohn's disease and ulcerative colitis, is
said to affect 1 million Americans, including 100,000 children and
teenagers whose growth it can stunt. It is classified as an
autoimmune disorder, although not enough research has been done to
confirm this.
It typically begins with inflammation in the intestine, rectum or
stomach. Common symptoms are diarrhea, abdominal cramping, rectal
bleeding and weight loss. It is uncertain what triggers the
inflammation. Theories range from viruses or bacterium inflaming the
digestive tract to a person's immune system being unable to
recognize certain proteins, and fighting off what it deems as
abnormal proteins.
Ever sickly as a child, Sofer was diagnosed with Crohn's disease
when he was 12 years old. He has spent much of his life in hospitals
and became known around school as a "children's hospital frequent
flyer." At first, physicians had no clue what was wrong with him,
but his mother kept pushing for help, insisting he was seriously ill.
As it turned out, she was right.
In 2003, he was accepted to UC Berkeley, but had to delay enrolling
because the disease got so bad during his senior year at Highland
Park High School in New Jersey that he was admitted to the hospital.
To get the care he needed, he was transferred to Cedars-Sinai
Medical Center in Los Angeles.
The inflammation had caused parts of his intestinal walls to narrow,
blocking the flow of nutrients and digestive fluids and causing
infection. That required surgery to remove 40 percent of his
intestine. At one point, he was down to 75 pounds.
"Three days after graduation, I landed in the hospital for six
months," Sofer said. "I felt like a 90-year- old man instead of a
19-year-old, it was so physically debilitating. I spent two years
recovering and getting my life back ... Spiritually, I was a wreck."
He said it hurt just to drink a glass of water.
But he never gave up his plan to get to Cal, and was given a special
dispensation to postpone enrollment.
"He called me every couple of weeks or months from the hospital, and
talked to me about his strategies to get here," said Ileana Dorn, a
supervisor in the UC Berkeley Office of Undergraduate Admissions who
was assigned to Sofer's case. "We don't usually postpone admission
for that long, but his was such a compelling situation that I really
went to bat for him."
Indeed, everything is finally falling into place for Sofer, who has
clearly been through hell.
Sofer lives at International House on campus and studies public
health and public policy. He has resumed jogging, is off the
steroidal medication he once took, and is on a strict, high protein
diet that excludes wheat, gluten and dairy products, which can
trigger inflammation.
He still gets visits from a nurse, has his blood tested regularly,
and self-administers IV infusions of fluid so he doesn't get
dehydrated.
"I have so much of my life back," said Sofer, who is thrilled to be
living in Berkeley, which he calls "the health food capital of the
world," and hopes to take a class with UC Berkeley food and
nutrition journalist Michael Pollan.
Indeed, at this point, nothing would make him happier than to see a
stamp highlighting the disease that paralyzed him at a time when he
should have been playing sports and dating. But it is also a disease
that has made him wise beyond his years, giving him rare insight
into what it means to be alive.
"If I were not to live much longer, I would be at peace with myself,
knowing I had done everything in my power to conquer this disease,"
he said.
###
NOTE: Gideon Sofer will be en route to Washington, D.C., today,
Wednesday, May 24. His meeting with the U.S. postmaster general is
set for 11 a.m. (EDT) tomorrow, Thursday, May 25. He can be reached
on his cell phone at (732) 266-3971, and will be checking voice
mail. He will also check e-mail sent to gideon@.... Because
Sofer's health condition is unpredictable, it's advisable to check
with him in case of any changes to the schedule. For more
information about Gideon Sofer and IBD, visit his Web site at:
http://www.ibdcure.org/. Print-quality photographs of Sofer are
available for download at:
Extracted from: http://www.berkeley.edu/news/media/releases/2006/05/24_ibd.shtml
===
Please direct all inquiries to: enews.mail@...
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