Lewy Body Dementia Association (LBDA) is a 501© (3) nonprofit organization dedicated to raising awareness of the Lewy body dementias, supporting patients, their families and caregivers, and promoting scientific advances.  The Association’s purposes are charitable, educational, and scientific.

Lewy body dementia (LBD) is a progressive brain disease and the second leading cause of degenerative dementia in the elderly after Alzheimer’s.   In LBD, abnormal round structures – called Lewy bodies – develop in regions of your brain involved in thinking and movement.  Patient’s with LBD share mental symptoms, such as confusion and loss of memory as with Alzheimer’s disease and motor symptoms, such as gait and slow movement as with Parkinson’s disease.   It is often misdiagnosed for that reason.  Accurate diagnosis is essential for successful treatment – LBD patients are highly sensitive to certain drugs that can worsen unpleasant symptoms or even be fatal.

Mission/Vision Statements:  Through education and outreach we support those affected by LBD, and promote research for a cure.  We envision a cure for LBD and quality support for those still living with the disease.  The Association consists of dedicated people, who understand the struggles of caregivers due to their personal LBD experiences.

Why I believe and support:  LBD has affected my paternal grandmother.  She was a vibrant, beautiful, educated banker until signs of this disease struck her at the age of 58.  Now at 65 she cannot function with any respect as an adult and is dependent on others for every aspect of her care.  In seven short years she has been robbed of her livelihood, her character, her memories and all her identity as a woman, sister, mother, wife, and most importantly her knowledge that she is my grandma.  As science progresses to understand and interpret the traits of this devastating disease, it is now known that LBD is hereditary and can be passed onto the next generation.  The protein markers in ones blood can identify the disease, and who is prone to inherit it.  My father has been tested and his protein markers from both his X and Y chromosomes are positive.  Only time will tell if he has inherited an active genome from his mother and more time will tell if it has been passed down to my brother and I.  My prayer is that there will be a cure by then.  In closing, please “remember those who can’t”. We never know when it may be one of us.