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"I feel I must attend because often
people with ALS are not well enough
to do this lobbying themselves," says
Rogow.
ALS patients lose the ability to
move, speak, swallow and eventually
to breathe. "But the mind remains
fully aware," says Burstein-Kahn, "and
that's the devastation of the disease.
It's a mind trapped in a non-function-
ing body. It is a very, very scary thing
not to be able to communicate with
your family."
With no known cure or proven
therapy for ALS, Burstein-Kahn says
the Food and Drug Administration's
1997 approval of the drug Rilutek is a
first. It is prolonging ALS patients'
lives, but is not showing a significant
enough impact to change the progno-
sis of the disease. Several studies
world-wide include a research project
devoted to finding a treatment for
ALS through gene therapy research,
conducted by Dr. Eva Feldman at the
University of Michigan.
Rosenberg says her father spent.a
month in Mexico unsuccessfully
searching for a miracle cure described
on the Internet.
After discovering various research
studies, she accompanied her father to
Indiana, the Cleveland Clinic and to
participate in an 18-month experi-
mental study at Northwestern
University. "The research is for the
future, to benefit someone later on,"
says Rosenberg. "Hopefully, his par-
ticipation will make a difference to
somebody who is alive today. He's my
hero — I told him that."
Saturday's dinner/auction will be
held in memory of Jerry Klask and
Sanford Roth. Roth died on April 28.
"Our dads were the most impor-
tant people in our lives," says
Rosenberg. Rogow adds, "We will
forever admire their incredible spirit
and courage in battling ALS and the
way they lived their lives. Lisa and I
will continue with this cause until a
treatment or cure is found." ❑

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This is a Federal Deposit Insurance Corporation insured account (FDIC).
A minimum opening deposit and balance of $500.00 is required to obtain the stated Annual Percentage Yield.
*Annual percentage yield when compounded quarterly. Rate is accurate as of 04/28/00. Penalty for early withdrawal from certificate accounts may be assessed.

5/12

2000

128

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Advertise in our JN Entertainment Section.

event of every dollar
sp e nt on research,
services and education
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ALS
$sooatiotir in Calabasas, CA.