October 2011 Newsletter

LBD Awareness Month is Here!

From community block parties to benefit concerts, volunteers across the U.S. are showing their commitment and passion for A Month To Remember.  

Momentum for LBD Awareness Month started building over the summer with campaign volunteers' LBD awareness-building events like Steve Lamb's Tri-State Dog Show in Huntingdon, WV, Rita Oliver's Oakland Beach Cruise event in Warwick, RI and Tina Christie's participation in the Philadelphia Memory Walk.  Their dedication raised over $11,000 for the LBDA mission.  And Caroline Maynard was on the road in September to help those affected by LBD.  She ran her first half marathon in Westerly, RI in memory of her father-in-law, Frederick C. Maynard, Jr, raising over $6,000.  Thank you, Steve, Tina and Caroline for shining a light on LBD in your town!

Creativity abounds this year when it comes to events designed to raise LBD awareness, such as Sue Voegele's Pampered Chef party in Manheim, PA and Kimberly DeFilippis' community block party in Bolton, CT.  Other volunteers are challenging friends to sponsor them in road races across the country.  For example, Kris Antoniacci (Fort Lauderdale, FL) and Adam Malaty-Ur (Naperville, IL) are both running in the Chicago Marathon in memory of their fathers.  MaryKate Kelly (Milford, PA) is headed to Boston to run the Allan D. Morrison 5K Run/Walk in honor of her father.  

But awareness doesn't have to be town-wide.  Campaign participants are making  a difference without even leaving their neighborhood.  From garage sales to lemonade stands, adults and kids alike are introducing their neighbors to the existence of Lewy body dementia.  

And the first official LBDA Hub of Hope is (drum roll, please!)...

Meet Boston, MA, a powerhouse of LBDA volunteers!  Boston has three support groups for LBD families and together they have generated a remarkable amount of synergy in the last two years, including multiple awareness and fundraising events spearheaded by very passionate volunteers.  

This year for example, the Boston Hub of Hope members joined together to organize a by-invitation benefit concert, starring American operatic soprano, Ilana Davidson.   Victoria Ruff, has organized a public lecture on LBD by Dr. Stephen Gomperts of Harvard Medical School.  And last but not least, LBD families in Boston and beyond are eagerly awaiting October 15th, for the 3rd annual Allan D. Morrison 5K Run/Walk in Melrose, MA.  The race began as a tribute to Coleen Greco's father, Allan D Morrison, who ran the inaugural race; however, it quickly grew to wrap its arms around more than one dozen LBD families in the first year.  Coleen's race has raised over $70,000 in the past two years for LBDA and has built a sense of community and hope for those who have journeyed through this disease as a patient, loved one, caregiver, sibling, child, spouse or friend.  

It's not too late for you to participate!  

Like us on FaceBook for daily tips on raising awareness in your community.  Or download campaign materials for use in your community by visiting  What can YOU do to shine a light on LBD?

LBD Webinar - Only 175 'Seats' Remain

On October 5th at Noon Eastern time, LBDA is offering a free webinar, "New Insights Into Lewy Body Dementia," with Dr. James Galvin of New York University.  

Sign up today - space is limited!  All registrants will receive an email on October 4, 2011 with instructions on how to join the webinar. 

For those who can't attend, the event will be recorded and posted on LBDA's website for later viewing.  

Has LBD Affected Intimacy in Your Marriage?

Lewy body dementia brings many changes to the lives of people with LBD and their spouses. It's hard to name them all. Though there is one that may be on your list, even if you don't tell anyone about it - your sex life.

Dementias of all types, not just Lewy body dementia, change the nature of the relationship you have with your spouse. But you are not alone in negotiating this difficult new territory. addresses a variety of spousal questions, including ethics, erectile dysfunction, paranoia about affairs, hyper sexuality and maintaining intimacy in long term care environments in How Your Sex Life May Change When a Partner Has Dementia: 5 Common Dilemmas Spousal Caregivers Are Likely to Encounter

LBD Essay:  This Disease Stinks

So many families, so many stories. Is there anything that our LBD stories have in common? LBDA volunteer Adam King tells the story of Deborah, his mother-in-law, and the crisis that lead to her move into an assisted living facility. 

Read Deborah's story and see if the sudden dilemma his family faced and the decisions his family made sound familiar to you.