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LBDA Milestones

The Lewy Body Dementia Association was founded in 2003 to promote research into conquering the disease while assisting those who are affected by it today. Read below to learn of our progress toward these goals.

2010 2009 2008 2007 2006 2005 2004 2003


  • October 10-16, 2010 – LBD Awareness Week: Standing Strong with LBDA.
  • September 2010 – A national press release is issued on the new report, Caregiver Burden in Lewy Body Dementias.
  • August 2010 – LBDstories.com is launched, allowing families affected by LBD to share their personal stories and photos.
  • July 2010 – LBDA launches the first nationwide, grassroots LBD awareness movement.
  • July 2010 – – A second scientific paper on the Caregiver Burden in Lewy Body Dementias is published in the July, 2010 issue of Parkinsonism & Related Disorders.
  • April 2010 – A scientific paper on the findings from the survey on Caregiver Burden in Lewy Body Dementias is published in the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.
  • April 2010 – LBD Biomarker Symposium is held in Washington, D.C., bringing together leading LBD researchers in academia and industry.
  • April 2010 – The Alzheimer's Drug Discovery Foundation and LBDA announce the recipient of their first partnership research award through the Lewy Body Dementia Biomarker Research Program, Lawrence Honig, M.D., of Columbia University in New York.
  • March 2010 – A virtual support group is launched for men who are caring for a loved one with LBD.


  • December 2009 – LBDA’s National Support Group Network climbs to more than 63 support groups in 25 states and one Canadian province.
  • October 2009 – Two families run in marathons to support LBDA; Boston-area volunteers hold 5K for LBDA.
  • September 2009 – LBDA's national support group network grows to 55 support groups spanning 25 states and one Canadian province.
  • September 2009 – The Alzheimer's Drug Discovery Foundation submits a joint RFP for a collaborative research grant entitled Lewy Body Dementia Research Award.
  • August 2009 – LBDA staff, elder law lawyer Sean W. Scott, and LBDA support group facilitator Karen Karle produce a podcast on Lewy body dementias available at no cost on iTunes.
  • August 2009 – Neurologists campaign concludes with more than 500 new contacts with neurologists and 170 requests for educational material.
  • June 2009 – National Institute of Neurological Disorders and Stroke approves $150,000 in funding for LBD Biomarker Symposium, to be held in April 2010.
  • May 2009 – A Physicians Resources section, including an online publications ordering page, added to the Web site.
  • April 2009 – Research collaboration with Alzheimer's Drug Discovery Foundation launched
  • April 2009 – Result of LBDA Caregiver Survey presented at a poster session of the annual meeting of the American Academy of Neurology
  • March 2009 – Nearly 3,000 general practitioners contacted by direct mail through the Neurologist Outreach and Education Initiative


  • November 2008 – Published An Introduction to Lewy Body Dementia booklet with detachable medical alert card, available in print and on LBDA Web site
  • November 2008 – Distributed more than100,000 An Introduction to Lewy Body Dementia booklets to nearly 900 Area Agencies on Aging across the US
  • October 2008 – LBDA Local Support Group Network increased to 40 groups across the US and Canada, more than doubling our number of support groups in one year
  • October 2008 – Caregiver survey results were presented for the first time at the Congress on Non-motor Symptoms in Parkinson's Disease in Dresden Germany
  • June 2008 – Launch of LBDAtv via YouTube.com in order to make multimedia educational presentations on LBD available online 24/7.
  • June 2008 – Launch of redesigned www.lbda.org Web site
  • May 2008 – Released Current Issues in LBD Diagnosis, Treatment and Research, a publication authored by the LBDA Scientific Advisory Council. The publication was pre-ordered by more than 500 people
  • April 2008 – Promoted Current Issues in LBD Diagnosis, Treatment and Research through LBDA’s website and direct mail to thousands of doctors attending the American Academy of Neurology conference
  • March 2008 – Concluded LBD Caregiver Assessment survey with nearly 1,000 participants


  • December 2007 – Received $50K unrestricted educational grant from Novartis
  • September 2007 – Launched a major survey to assess LBD Caregiver Burden
  • June 2007 – Collaborated with Emory University on a presentation to the Georgia Association of Social Workers
  • May 2007 – Held roundtable discussion with LBD experts on current issues in LBD diagnosis, treatment and research
  • April 2007 – Invited for the first time to appear on a PBS television station’s talk show on dementia caregiving
  • March 2007 – Co-sponsored a multi-site symposium in partnership with The Mayo Clinic
  • January 2007 - Held the second annual Many Faces of LBD Symposium


  • December 2006 – Approved new corporate branding
  • October 2006 – Re-staffed the Atlanta office with an Interim Executive Director and established a staffing plan for 2007
  • September 2006 – Held our first major Strategic Planning Session
  • August 2006 – Launched a website survey to gather caregiver feedback
  • May 2006 – Testified at an FDA advisory panel meeting
  • February 2006 – Attended and participated in the “PDD/DLB at a Crossroad Symposium”
  • January 2006 – Held the first annual Many Faces of LBD Symposium


  • December 2005 - Announced a $500,000 grant from the Mangurian Foundation
  • November 2005 - Moved to Atlanta, Georgia
  • October 2005 - Hired first employee
  • April 2005 - First LBDA exhibit at a scientific/medical conference


  • December 2004 - Published the first printed informational brochure on LBD
  • November 2004 - First edition of the LBDA Newsletter
  • July 2004 - Scientific Advisory Council created
  • May 2004 - Completed registration as a nonprofit in all 50 states and DC
  • March 2004 - Toll-free helpline launched
  • February 2004 - Received 501(c)(3) designation from the IRS


  • August 2003 - First Board of Directors meeting and LBD caregivers meeting
  • July 2003 - Organization incorporated as a nonprofit in the US