Celebrating Robin Williams (July 21, 1951 – August 11, 2014)

Lewy Body Dementia (LBD) took Robin Williams from us much too soon. He struggled for years without an accurate diagnosis that would have explained the challenges he was facing that devastated his life. We are glad that a new film, “Robin’s Wish,” will be released September 1st on iTunes. It will shed light on his journey and benefit millions of people.

We have tremendous admiration for Robin Williams, his incredible contributions to the arts, and his effort to cope with LBD, a fatal neurodegenerative disease in great need of research funding and health system supports.  Robin brought joy to millions of people through his decades of successful film and stage work.

It was greatly disappointing to see how Robin’s death was reported in the media in 2014. He deserved a far better sendoff. The blame falls largely on an unacceptable lack of awareness of and compassion for dementia, notably Lewy Body Dementia, in our society.

What we don’t understand, and what we fear, we often mock, avoid or deny. This is true of dementia. Many of us can still remember when the world stigmatized cancer, and AIDs, in the same way. Understanding brings compassion, caring and support.

Thanks to the film’s Director Tylor Norwood, Scott Fitzloff, Susan Schneider Williams and Vertical Entertainment, Robin can be honored once again, and his story can help countless others in the process. Thanks also to the Lewy Body Dementia Resource Center of New York. They hosted a private screening of “Robin’s Wish” in 2019 to help bring visibility to LBD.

Robin’s story exemplifies why we advocate for families living with LBD.

Our co-founder, Sue Berghoff, has LBD, and she is looking forward to watching “Robin’s Wish,” because she understands the story more than the rest of us can ever know. We made a documentary about Sue’s journey with LBD, “Sue’s Story,” in 2017. We raised $200,000 last year for a Stanford post-doctoral research fellowship to identify a blood biomarker for LBD.

Here’s the thing: Sue’s dementia is advancing, but she lights up every time another step of progress is taken. We will continue to honor Robin’s memory, and Sue’s mission, in our work. Please join us!