January 2013 Newsletter

2012 Volunteer of the Year: Jason Rubin

Jason RubinCongratulations to Jason M. Rubin who was voted the 2012 LBDA Volunteer of the Year! On the tenth anniversary of his mother’s death from LBD, he wrote a blog post about his mother’s illness, and was contacted to share his story with the LBDA audience.

For the past three years, Jason, who is a successful writer and novelist from the Boston area, has donated his time and talents to LBDA. He has recently published his first novel, "The Grave and the Gay". Jason has served on LBDA’s Communications Task Force, and provided us with much needed copywriting of brochures and fundraising pieces. Last year, Jason helped organize a trio recital as part of a highly successful fundraising event. He has also added to our volunteer brigade by recruiting his friend Judy Carter to assist LBDA with design for our print materials.

Thank you, Jason, for all of your hard work and dedication to our organization and we look forward to working with you in 2013!

LBD Story: Unexpected Benefits of Speech Therapy

John Snyder ReadingJohn Snyder originally took speech therapy to help with the impact of LBD on his vocal strength, but the benefits went far beyond just speech. Pat Snyder, author of "Treasures in the Darkness," a memoir about her and John’s journey with LBD, shares this new story about an unexpected gift from speech therapy — tender holiday moments and a growing bond between grandfather and grandsons. Read more.

Research Update: Cell to Cell Transmission Confirmed in Lewy Body Disease

Researchers at the University of Pennsylvania have discovered how Lewy body pathology spreads in the brain. Researchers injected a synthetic version of misfolded alpha-synuclein into the brain, which resulted in a cell to cell transmission of the rogue protein to the nerve cells near the injection site. Parkinson’s-like Lewy body pathology then developed in the brain.

Read the full story.

Caregivers Neglect Their Own Health in Order to Look After Others

(Source: Most caregivers are spread so thin that they don't have time to take care of their own needs, NBC's Dr. Nancy Snyderman reports. They don't go to the dentist, get mammograms or annual checkups so they get sick. Even worse there's evidence that this kind of stress can contribute to the onset of dementia which is why it is important for caregivers to get help, to find ways to take breaks, and to make and keep their own doctors' appointments. What's the answer to getting caregivers to care for themselves? People need to ask for help.

Read the full story.

Caregiver Corner: Caregiving Requires Facing Reality

One question often asked on the forum is, "How do I deal with the reality of leaving behind the life I had in order to become the primary caregiver to my parents?" The words used vary, but the question is essentially the same. How do we cope with this major change in our lives? Read advice from Carol Bradley Bursack, author of “Minding Our Elders: Caregivers Share Their Personal Stories. Her article, “Facing Reality — Caregiving has Changed Your Life” originally appeared at

"Alzheimer Gene" Increases Risk of Lewy Body Dementias

While Lewy body disease can exist in a "pure" form with little or no co-existing Alzheimer’s disease, at least half of individuals with Lewy body disease also have significant amounts of Alzheimer’s pathology. Research now reveals that a genetic variant that increases the risk of developing both early-onset and late-onset Alzheimer’s disease has been identified to also be a risk factor for Lewy body disorders.

Learn more.