About the Lewy Body Dementia Association

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

The LBDA was formed by a group of caregivers, who met in an online LBD caregiver support group. Discussions about the need of support for LBD caregivers and the lack of public awareness about LBD led to the organization’s incorporation. The Directors of the LBDA Board are located throughout the US, and LBDA volunteers are from the US, Canada, and the United Kingdom. The Association consists of a dedicated group of people from all walks of life, who understand the struggles of other caregivers due to their personal LBD experiences.

Our Mission

Through outreach, education and research, we support those affected by Lewy body dementias.

Our Vision

We envision a cure for Lewy body dementias and quality support for those still living with the disease.

History and Milestones

The LBDA was formed by a group of caregivers, who met in an online LBD caregiver support group. Discussions about the need of support for LBD caregivers and the lack of public awareness about LBD led to the organization’s incorporation. The Directors of the LBDA Board are located throughout the US, and LBDA volunteers are from the US, Canada, and the UK. The Association consists of a dedicated group of people from all walks of life, who understand the struggles of other caregivers due to their personal LBD experiences.

Milestones

2008

April - Announced brand new publication for physicians: Current Issues in LBD Diagnosis, Treatment and Research.
March - Concluded the LBD Caregiver Burden survey.

2007

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

2006

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

2005

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

2004

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

2003

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

Board of Directors and Staff

Board of Directors

Officers
Angela Taylor, President
James Whitworth, Vice President
James Whitworth, Secretary
Debbie Hackman, Treasurer

Directors
James Galvin, MD
Ronnie Genser
Nancy Silverman
Joe Whiteis
John Young

Staff
Scott Walters, CEO

Scientific Advisory Council (SAC)

The LBDA Scientific Advisory Council (SAC) members are international leaders in LBD research and clinical management. They provide the most up-to-date medical and research information, which we use to create informative publications for the general public, caregivers and the medical profession. Click here to see a list of SAC members.

Volunteer Awards

2007 Volunteer of the Year

Helen Whitworth from Mesa, Arizona is the LBDA volunteer of the year for 2007. Helen joined LBDA in 2005 when she began exhibiting at medical conferences. In 2006, she took over writing volunteer job descriptions, supervising new volunteer applications, and developed a new volunteer orientation process. Under her supervision our volunteer ranks have nearly doubled and we are now more effectively engaging volunteers in our mission across the country. Helen continues to exhibit at medical conferences to help spread the word about LBD to physicians, and is currently the Outreach and Education Committee Chair. Thank you, Helen, for all that you do!

2006 Volunteer of the Year

Carol Caughran from Tamarac (Ft. Lauderdale), Florida is the 2006 LBDA volunteer of the year. In September 2005 Carol started the first LBD monthly support group in the US, and in January 2006 held a LBD caregiver's symposium in Coral Springs, FL. The symposium included two professional speakers and a caregiver panel. Carol arranged for the event to be filmed and it is now an excellent resource for professional and home caregivers (available on DVD and VHS). Thank you, Carol!

2005 Volunteer of the Year

Gourete Broderick from Toronto, Ontario, Canada was selected as the first LBDA volunteer of the year for her dedication to raising awareness of LBD throughout Canada, the US and beyond. Gourete (a.k.a. "Courage") conducted an international e-mail campaign to professionals and has mailed LBD brochures to hundreds of organizations throughout Canada. Thank you, Gourete!

Reports

Year 2006 - Annual Report (PDF)
Year 2006 - IRS Form 990 (PDF)
Year 2005 - Annual Report (PDF)
Year 2005 - IRS Form 990 (PDF)
Year 2004 - Annual Report (PDF)
Year 2004 - IRS Form 990 (PDF)