SUNY to Host Private Pre-Release Screening of a Documentary about the Late Comedian Robin Williams

July 18, 2019

Event Features Medical Symposium and Roundtable on Lewy Body Dementia, the Disease that Claimed His Life

New York City – The State University of New York will host a private pre-release screening today of a documentary about Robin Williams that weaves together the untold love story of his marriage to Susan Schneider Williams, his untimely suicide and misunderstood disease, and his universal experience moving through pain in the search for healing and joy. Lewy Body Dementia (LBD) is a form of dementia that often resembles Alzheimer’s, Parkinson’s, and other psychiatric disorders.

"We are pleased to shine a light on Lewy Body Dementia, which is the second most common form of progressive dementia after Alzheimer’s disease," said SUNY Chancellor Kristina M. Johnson. "Like Robin Williams, many people who have this disease are not diagnosed, and the effects are devastating. We applaud his widow Susan Schneider Williams for raising awareness of this terrible illness."

The Academy Award-winning comedian died at the age of 63 on August 11, 2014. Autopsy results later showed he had suffered from diffuse LBD, after which his widow Ms. Williams began advocating for the disease.

"A large part of our mission is to bring much needed awareness of LBD while promoting research, and we are grateful to be collaborating with SUNY for this special event, which will contribute to both," said Norma Loeb, founder and executive director of the Lewy Body Dementia Resource Center.

According to the Lewy Body Dementia Resource Center, LBD affects more than 1.4 million Americans. LBD causes cognitive decline, movement problems, sleep disorders, and changes in behavior and mood. It is differentiated from Alzheimer’s disease by hallucinations, fluctuations in cognitive ability, attention, and alertness; and REM sleep behavior disorder, in which people act out their dreams. The disease is named for Friedrich H. Lewy, a researcher who first described the abnormal protein deposits in the early 1900s, while researching Parkinson’s disease.

Since her husband’s death, Ms. Williams has worked to raise awareness of LBD. In 2016, she wrote an article in the medical journal Neurology, entitled "The Terrorist Inside My Husband’s Brain," which described his suffering in detail.

The pre-release screening will be followed by a discussion with Ms. Williams and Tyler Norwood, the director of the film, a documentary filmmaker from Northern California.

Other speakers at the screening and symposium are:

  • Mantosh Dewan, the interim president of SUNY Upstate Medical University in Syracuse. He is a SUNY Distinguished Service Professor and former chairman of the Department of Psychiatry.
  • Norma Loeb, founder and executive director of the Lewy Body Dementia Resource Center. Ms. Loeb cared for her mother Lillian who had LBD.
  • Vicki Shanker, a movement disorder specialist at Beth Israel Mount Sinai Medical Center and program director of the Mount Sinai Downtown Neurology Residency Program. She is also an assistant professor of neurology at the Icahn School of Medicine at Mount Sinai.

For more information about attending the screening, visit:

Medical professionals interested in attending the symposium and roundtable should visit:

About the State University of New York
The State University of New York is the largest comprehensive system of higher education in the United States, and more than 95 percent of all New Yorkers live within 30 miles of any one of SUNY’s 64 colleges and universities. Across the system, SUNY has four academic health centers, five hospitals, four medical schools, two dental schools, a law school, the country’s oldest school of maritime, the state’s only college of optometry, and manages one US Department of Energy National Laboratory. In total, SUNY serves about 1.4 million students amongst its entire portfolio of credit- and non-credit-bearing courses and programs, continuing education, and community outreach programs. SUNY oversees nearly a quarter of academic research in New York. Research expenditures system-wide are nearly $1.1 billion in fiscal year 2023, including significant contributions from students and faculty. There are more than three million SUNY alumni worldwide, and one in three New Yorkers with a college degree is a SUNY alum. To learn more about how SUNY creates opportunities, visit

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