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A former Detroiter's film spurs research
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Special to the Jewish News
see the character move as if it was a
Sasson plans to donate funds from
ticket and soundtrack sales, as well as
other sources, to Jacob's Cure for
research into Canavan, MS, ALS and
"My grandparents and parents have all
aimed to instill a lesson of philanthropy
in my brothers and me," said Sasson. "I
have found this project to be more than
a filmic endeavor."
hildren who have Canavan
disease, a genetic neurological
disorder that deteriorates the
white matter (myelin) in the
brain, have an average life expectancy of
3-10 years. Filmmaker and former
Detroiter Stephenie Sasson is hoping to
change that grim statistic with her docu-
mentary As Daylight Breaks, featured in
this year's Lenore Marwil
Jewish Film Festival.
The film focuses on the
challenges of 8-year-old
Jacob Sontag, who has
Canavan Disease, and the
inspiring relationship he has
with his mother, Jordana,
and his stepfather, Gareth
Sasson read about Jacob in
1999 in the New York Times
Magazine. Impressed by the
powerful bond between
Jacob and his mother,
Sasson approached the fami- Jordana Sontag holds 8 year old Jacob.
ly about doing a documen-
tary as part of her under-
As Daylight Breaks has gained the sup-
graduate thesis at New York University.
port of Senator Hillary Rodham and
"I knew right away it would make a
Congresswoman Nita Lowey, who are
great film," said Sasson, "and Jordana
co-chairing an upcoming screening of
agreed to put it into our hands."
the film on Capitol Hill to try to gain
Mrs. Sontag started "Jacob's Cure," a
additional funding for research.
non-profit foundation, to raise money
Like Tay Sachs, Canavan is most
for research on gene therapy and neural
among Ashkenazi Jews. Both
stem-cell transplantation. So far, Jacob
parents must be carriers. Now that the
and several other children have achieved
gene has been identified, a simple blood
dramatic results through the use of an
test can determine whether parents have
advanced gene therapy procedure. •
the potential to pass on the disease.
According to his mother, Jacob has
Chaya Leah Tinman of Southfield is
"miraculously" produced new myelin.
too familiar with the disease. Her son
His weight and overall strength have
now 16, was diagnosed with it
increased, his eyesight has improved,
shortly before his second birthday.
he is now vocalizing to communicate.
"The doctors said he wouldn't live to
Sasson is the daughter of Monica
be 2 years old, but he had been in the
(Minowitz) and Henry Sasson of
hospital for several weeks and we wanted
Bloomfield Hills. She attended Detroit
to bring him home," said Tinman, a
Country Day School, UCLA and the
worker and school inclusion coor-
School of the Art Institute of Chicago
for the Harris Children and
before completing her studies at New
Family Division of JARC. "The day he
York University's Tisch School of the Arts.
"I have always known that I wanted to came home, he smiled, and we knew we
had done the right thing."
be a Filmmaker," said Sasson. As a child
To the best of Tinman's knowledge,
I would make similar drawings in little
Hershy is the only person in Michigan
white notebooks, changing the place-
ments of the figures only slightly so that
been a long journey," said Tinman.
when the book would flip, you would