October/November 2016 Newsletter



Save the Date: Ask the Expert Webinar

Register today to save your spot!

Join us on Monday, December 5th at 3:00 pm EDT as Bradley Boeve, MD provides a presentation on comprehensive clinical care in Lewy body dementia (LBD).

Mark your calendar and don’t forget to watch Dr. Boeve talk about diagnosing and treating LBD.

Ask the Expert is a three-part series of educational webinars allowing LBD families and healthcare professionals the opportunity to ask leading experts informative questions.


Get Informed: Clinical Trials

It’s an exciting time in LBD research with new drug studies under way. Before joining a study, LBDA encourages all parties related to LBD, to educate themselves about clinical trials. Visit our new Clinical Trials webpage today.


New Report Available: Lewy Body Dementia - State of the Science

Advancing LBD research is vitally important to the entire LBD community. LBDA is excited to share our newest white paper, Lewy Body Dementia: The State of the Science. This report provides an overview of major research findings to date and highlights key opportunities needed to drive scientific progress forward.

Download the complete report or you can also read the White Paper Summary.


Neurology publishes special editorial by Susan Schneider Williams

On September 27, 2016 the medical journal Neurology published ‘The terrorist inside my husband’s brain’, a frank and powerful story of one couple’s unknown journey into LBD. Written by Susan Schneider Williams, widow of Robin Williams, this unflinching piece echoes what so many LBD families face. From odd, sometimes upsetting symptoms, through diagnostic challenges, to the pain of helplessness watching the relentless decline of someone deeply loved, this intensely personal story includes a plea to scientists. “Do not give up.” The Lewy Body Dementia Association applauds Mrs. Williams for bringing greater visibility to LBD. Read the article in Neurology.


LBDA and Takeda Pharmaceuticals: Putting LBD in the Spotlight

During LBD Awareness Month, Takeda Pharmaceutical's hosted a seminar where members of the LBD community were special guests. Takeda organizes several of these events a year, so its employees may hear firsthand about the impact being made on different diseases affecting individuals and families. This exiciting Boston event was also webcast around the globe so all Takeda staff had the opportunity to learn about LBD. Dr. James Leverenz, chair of the LBDA Scientific Advisory Council, presented on the clinical and biological aspects of LBD. His presentation was followed by a group discussion with members of the LBD community, moderated by Angela Taylor, LBDA’s Director of Programs.


Facing Lewy Body Dementia With Courage And Love

Years ago, the word “dementia” was rarely heard. Senile was the more common expression. This would conjure up an image of a forgetful old codger whiling away the time in a rocking chair.

In today’s world, dementia is becoming more of a household word, but many are still unfamiliar with the correct definition. On Marco Island, Hideaway Beach resident Michael O’Leary, 61, is putting a face on Lewy body dementia. With movie star good looks and a physique of athletic prowess, this retired Bloomfield Township, Michigan firefighter/paramedic, personal trainer, and pickleball medalist was diagnosed with LBD in October 2015. Michael is currently participating in a clinical trial. Read more of Michael's story