Throughout the year, LBDA staff have been traveling across the country to promote discussion and awareness of Lewy body dementias in local communities and at national conferences. Here are just a few of the places we’ve been on your behalf!
- Atlanta, GA at the CDC Neurological Conditions Surveillance Summit patient advocacy organizations gathered to learn about launching a new data collection system. The system will measure the number of people that have neurological diseases like LBD. The two diseases in the pilot stage of the project are multiple sclerosis and Parkinsons’ disease.
- Boston, MA at the Stakeholder Working Group meeting for the IMPACT Collaboratory to build the nation’s capacity to conduct “pragmatic clinical trials.” This allows for the study of interventions for people living with dementia and their caregivers in more ‘real world’ healthcare settings.
- San Diego, CA at the Clinical Trials in Alzheimer’s Disease (CTAD) conferences where the results were announced on a clinical trial of an experimental drug, pimavanserin, in dementia-related psychosis. Drug studies included people with various forms of dementia, including LBD.
- St. Louis, MO at the National Institute on Aging’s Alzheimer’s Research Centers meeting, to present to leaders in dementia research on a new national initiative. Led by LBDA’s Angela Taylor and Mayo Clinic’s Ronald Petersen, MD, the Dementia Nomenclature Initiative will seek opportunities to improve terms of cognitive impairment and the neurological diseases that cause it.
- Washington, DC at the Advisory Council on Alzheimer’s Research, Care and Services meeting where LBDA highlighted research findings showing LBD is the most expensive form of dementia. The study underscored how important preventative measures are to reduce falls and hospitalizations in people with LBD.
- Washington, DC at the UsAgainstAlzheimer’s National Alzheimer’s Summit to lead a panel discussion, “Language Matters: The Nomenclature Dilemma for Clinicians, Researchers, and People Living with Dementia.”
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