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Lewy body dementia – Do you even know what that is?

Too many of us and our families have been affected by dementia in one form or another. October is recognized by patients, advocates and the medical community as Lewy Body Dementia Awareness month, and perhaps this year it will mark new hope for those suffering from this disease.

Dementia or brain damage and injury as a mental health and neurology medical symbol with a thinking human organ made of crumpled paper torn in pieces as a creative concept for alzheimer disease.

Millions of people and their families around the world, are suffering from a little-known devastating neurodegenerative disease that is often misdiagnosed, largely misunderstood and has no approved treatments. This confusing disease, which can masquerade as Parkinson’s disease, or a psychiatric condition, is the largest dementia that you have never heard of, and when correctly diagnosed is called Lewy body dementia (LBD).

This form of dementia briefly gained global attention in 2014 when America’s celebrated actor, Robin Williams, tragically passed from what was later determined to be Lewy body dementia. His wife, Susan Williams, has described LBD as the “terrorist that lived in Robin’s head and the one that took his life.”

Today there are 1.5 million Americans suffering from LBD – not taking into account it’s impact on the families of those affected.  But there is cause for optimism as we learn to better understand the symptoms, causes and potential treatments for the disease.

Clinicians now recognize that Lewy body dementia presents itself with four characteristic core features that can help to make a correct diagnosis:

  • Cognitive impairment: principally affects a person’s visual perception and attention capabilities, not normally memory.

  • Parkinson’s misdiagnosis: patients repeatedly complain of slowness, stiffness and balance abnormalities.

  • Hallucinations: patients see things that are not there, typically they speak of seeing little people and furry animals.

  • Rem sleep: patients act out dreams. This symptom can begin ten to twenty years prior to the presentation of other symptoms.

There are no approved treatment options for LBD, so physicians sometimes prescribe symptomatic drugs used for Alzheimer’s, Parkinson’s and psychotic episodes to help manage worrisome symptoms such as memory problems, hallucinations and movement difficulties.

Fortunately, the Lewy Body Dementia Research Association’s (LBDA) Centers of Excellence are making progress in understanding the underlying causes of LBD, including how certain toxic proteins are believed to bind to brain cells, to essentially clog them, and lead to nerve cell death. The National Institutes of Health has been supporting research into this field  – it has given a $10.7 million grant to the Cleveland Clinic to expand a national consortium studying dementia with Lewy bodies. My company has benefited with a $30 million grant from the National Institute of Aging (an arm of the NIH), to move forward on our lead drug candidate and Phase 2 clinical study called SHIMMER.

Too many of us and our families have been affected by dementia in one form or another. October is recognized by patients, advocates and the medical community as Lewy Body Dementia Awareness month, and perhaps this year it will mark new hope for those suffering from this disease.

Photo: wildpixel, Getty Images


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Lisa Ricciardi

Ms. Ricciardi has served as the chief executive officer and president of Cognition Therapeutics since March 2020 and as a member of the board of directors since March 2019. From July 2018 to October 2019, she served as CEO of Suono Bio, a biotech company based on Langer Labs (MIT) technology. Prior to her position at Suono Bio, Ms. Ricciardi was a retained executive for BioBusiness Links from November 2015 to June 2018 where she performed interim operating executive and advisory board roles. She served as the senior vice president of global corporate & business development of Foundation Medicine from July 2014 to November 2015, and senior vice president of U.S. and international business development of Express Scripts from October 2010 to October 2012 and in both cases, led deal teams to sell the two companies. Ms. Ricciardi was in the commercial division of Pfizer Inc., taking three drugs to launch before being appointed by the chairman to run global business development. Ms. Ricciardi previously served on the boards of Contrafect (Nasdaq: CFRX), Chimerix (Nasdaq: CMRX), United Drug Healthcare Group, PLC (LSE: UDG) and Sepracor (Nasdaq: SEPR). She was appointed as the executive in residence at Columbia Technology Ventures in January 2020.

Ms. Ricciardi earned a Bachelor of Arts degree cum laude in English and religion from Wesleyan University and an MBA from the University of Chicago Booth School of Management.

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