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‘Hollywood just dropped me’
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‘Hollywood just dropped me’

Show biz photographer fights rare genetic disease

Robert Zuckerman was enjoying a promising career as a photographer hired to take still pictures during the production of major Hollywood films.

Zuckerman began working on “Training Day,” the 2001 action adventure starring Denzel Washington and Ethan Hawke — Washington won the Academy Award for Best Actor for his role and Hawke was nominated for Best Supporting Actor — then went on to photograph six more of Washington’s films.

Along the way he took pictures of such other famous actors as Ed Harris, John Lithgow, Debra Winger, and Melissa Leo, as well as hundreds of non-famous people he encountered on movie locations and on the streets of Los Angeles and New York. 

But nine years after his first film assignment, Zuckerman’s work in Hollywood came to a halt. In 2010, at the age of 55, he was diagnosed with Adult Polyglucosan Body Disease, a rare genetic disorder that disproportionately affects Ashkenazi Jews. When he became wheelchair-bound, “Hollywood just dropped me,” he said. “It was devastating.”

The story of Zuckerman, who grew up in Manhattan and lived for a time in Fort Lee, is told in “Life Through a Lens,” a 12-minute documentary that will be shown at the New Jersey Jewish Film Festival ReelAbilities Film Festival on Sunday, April 22, at JCC MetroWest in West Orange.

Unlike other Jewish genetic diseases such as Tay-Sachs, Gaucher, and Canavan, which begin in early childhood, the symptoms of Zuckerman’s illness, which is known primarily by its initials, APBD, begin developing around middle age. 

It is one of 58 diseases to which Ashkenazi Jews are disproportionately susceptible, according to Jeffrey Levenson, a Scotch Plains native who is a friend of Zuckerman and a producer of the documentary. One out of every 120 people are carriers of the gene for APBD; when it comes to Ashkenazi Jews, the number is one in 48, he said. 

Levenson, whose father and uncle died from APBD, is volunteer senior adviser to the APBD Research Foundation. 

“As of now, there are only 200 known cases of APBD in the world, but we think there are thousands out there,” he told NJJN. 

Apart from the Ashkenazim, he is unaware of the rate of the gene’s presence in other ethnic groups. He said the gene has 41 known mutations, and among those diagnosed with the disease have been Cambodians, native Hawaiians, and Lutheran Americans who trace their ancestry to Poland. None of them has an apparent connection with Ashkenazi Jewry. 

APBD is often misdiagnosed as Multiple Sclerosis or Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s Disease), said Levenson. But in the past year a simple saliva test has been developed to screen for the gene, and its cost is underwritten by the foundation. Test kits are available by logging on to the foundation’s website at apbdrf.org.

“My message is: If people have symptoms they should be tested,” said Zuckerman, who spoke with NJJN from a skilled nursing facility near Jacksonville, Fla.

Despite his condition, he has not stopped practicing his art and relating to others. He works with students at Florida International University and several high schools in his hometown of Miami, where he also has curated exhibits of artworks by Holocaust survivors. 

His advice to anyone who faces a disease such as his is simple: “Don’t let it stop you from living and doing the things you want to do. That’s not just to the APBD community, but to all people who are challenged by mobility issues.”

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