Robin Williams’ wife shares their struggles with Lewy body disease

The disease, an umbrella term to dementia related to the presence of Lewy bodies (abnormal deposits of a type of protein) in the brain, affects millions across the globe

Pic courtesy: Getty Images
Pic courtesy: Getty Images

“I am not a medical professional, and I am not a spokesperson for anyone. I am a witness,” says Susan Schneider Williams, the widow of famed Hollywood actor Robin Williams. “What my husband and I went through at the hand of Lewy body disease was so horrifying that I want to see the cause eradicated. Not only for my own sense of justice, but for all the people with it who are suffering right now, and for those who may be next,” Williams continued.

The artist, author and activist spoke at the 2016 Forbes Healthcare Summit with Vivek Ramaswamy, CEO of Roivant Sciences and Axovant Sciences, and Ryan Watts, CEO of Denali Therapeutics. Williams lived through seeing the neurodegenerative disease eat away at the mind of her late husband, turning a brilliant comedian who could flawlessly perform two Broadway shows a day into an anxiety-ridden man who has trouble remembering a single line on the set of Night at the Museum: Secret of the Tomb.

“When Robin’s ability to create, to see, move, think, imagine, and to remember was slipping through his fingers, he watched what it meant to be human evaporate before his eyes,” Williams recounted. Doctors were never able to pinpoint the cause of Robin’s symptoms – from tremors to anxiety, paranoia and insomnia – in his lifetime. He committed suicide in August 2014, and his condition, Lewy body dementia, was discovered in an autopsy after his death.

The disease, an umbrella term to dementia related to the presence of Lewy bodies (abnormal deposits of a type of protein) in the brain, affects an estimated 1.4 million Americans. The disease is often misdiagnosed even though it’s the second most common form of dementia after Alzheimer’s; doctors first pegged Robin’s condition as Parkinson’s. Williams only learned of the term Lewy body dementia (LBD) three months after Robin’s death – when she was told that the disease has invaded almost every part of her husband’s brain and brain stem.

To make matters more complicated, Robin did also suffer from Parkinson’s (which is closely related to LBD), and had early-stage Alzheimer’s as well. Williams is now advocating for more research into brain diseases: “A lot has been done for healing our bodies, but I’d like to know, where are we in healing the brain,” she asked.

Watts, who runs Denali Therapeutics, a startup that focuses on neurodegenerative diseases, says research in the area has seen rapid growth. His company has raised nearly $350 million in funding and leapt into unicorn status after its latest financing round in the summer of 2016. “What’s really happened is an explosion of genetic understanding of these diseases,” said Watts.

In the 1990s, scientist can only pinpoint two to three genes that linked Alzheimer’s and Parkinson’s; now, 30 to 40 genes and multiple pathways have been identified, Watts explains.

“We see neurodegeneration today where oncology was in the ’90s,” said Watts.

If oncology is in the bottom of the first inning in its revolution, then the neurodegeneration field is still in spring training, joked Ramaswamy. A former hedge fund manager, Ramaswamy founded Roivant in 2014. The company buys drugs abandoned by big pharmaceutical and biotech companies, and develops and commercializes them through subsidiaries like Axovant, which focuses on treatments for dementia. Ramaswamy took Axovant public in 2015 –  when he was only 29 years old. The company now has several drugs in the clinical trial phase, including a treatment for Lewy body.

“The need has never been greater, and the time and moment has never been more right,” said Ramaswamy, who thinks the field is on the edge of a breakthrough despite setbacks pharmaceutical companies have faced in developing new drugs. “All it will take is a hair’s trigger for a single success, to open the floodgates for resources flowing into the neuroscience field, as much as they have in oncology,” says Ramaswamy.

Williams, who sits on the board of the American Brain Foundation, is hopeful that the fact her husband had three neurodegenerative diseases means that they have similar causes and perhaps, similar cures. “I’m excited about what [Ramaswamy and Watts] are doing, I’m encouraged.”

Source: Forbes