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The Lewy Body Dementia Association (LBDA) provides critical services and resources in three main areas: Family Services, Research and Advocacy, and Education and Awareness.
LBDA helps to connect LBD caregivers to each other and to the most current information about LBD. Resources available to caregivers through LBDA include:
- Discussion forums where caregivers meet and share their experiences
- National network of LBD support groups
- LBD Caregiver Link – 1-800-LEWYSOS – where caregivers can connect with LBDA volunteers who have personal experience with LBD.
Research and Advocacy
In collaboration with its Scientific Advisory Council (SAC), LBDA provides regular updates on advances in LBD research. SAC members are international leaders in LBD research and clinical management. They provide the most up-to-date medical and research information, which LBDA uses to create publications for the general public, caregivers, and healthcare professionals. LBDA and the SAC organize scientific meetings, award pilot grants for LBD research, and advocate for increased research funding and the needs of LBD families.
Education and Awareness
LBDA offers a range of resources to engage and educate the public about LBD, including:
- An informative website (www.lbda.org)
- Easy-to-understand publications about LBD
- LBDStories.com, where LBD families and individuals can share their experiences and photos
- Webinars on LBD and related topics
- LBDA’s monthly e-newsletter, The Lewy Body Digest
- LBDAtv YouTube Channel, which features LBD events, webinars, and educational presentations
- LBDA social media: Facebook group, Twitter (@LBDAssoc), and LinkedIn group
LBDA also offers healthcare providers a number of publications written by members of our Scientific Advisory Council that deliver an excellent introduction to clinical issues for both primary care physicians and specialists.
LBDA is a small organization with a big mission: raising awareness, providing outreach and information, and supporting research into LBD. Your participation is essential to helping us realize our goals and help the millions of people whose lives have been affected by LBD.
Volunteers are the cornerstone of LBDA. As a volunteer, you can facilitate a support group, distribute educational materials within your own community, help out at events, and much more. For a complete list of volunteer opportunities and to get involved, please go to www.lbda.org/go/volunteer.
Making a Donation to LBDA
As a 501(c)(3) nonprofit organization, LBDA is dependent on and grateful for the generous support of so many individuals, businesses, and organizations. Your donation to LBDA goes directly to fulfilling our mission and building a more hopeful tomorrow for those who are struggling with LBD today. To make a secure online donation, please visit: www.lbda.org/go/donate. You can also send a check made out to LBDA to:
912 Killian Hill Road S.W.
Lilburn, GA 30047
What is Lewy Body Dementia (LBD)?
Lewy body dementia (LBD) is the second most common form of degenerative dementia, affecting 1.3 million people in the United States alone. LBD symptoms include:
- Progressive decline in mental abilities, like confusion or memory loss
- Fluctuating attention and alertness
- Slow, stiff movements (parkinsonism)
- Visual hallucinations
- Sleep disorders
- Severe medication sensitivities
Because some of its symptoms are shared with Alzheimer’s and Parkinson’s, LBD is commonly misdiagnosed, which increases the risk of exposure to medications that are potentially dangerous to those with LBD. However, many symptoms of LBD are treatable and early recognition, diagnosis, and treatment can significantly improve the quality of life for people with LBD. The Lewy Body Dementia Association (LBDA) was founded to ensure that individuals and families living with LBD do not have to face this disease alone.
The Lewy Body Dementia Association (LBDA) is the only nonprofit organization in the U.S. focused solely on Lewy body dementias. LBDA was founded by LBD caregivers and today the majority of its Board of Directors are still current or former LBD caregivers. The LBDA’s Scientific Advisory Council (SAC) is composed of international leaders in LBD research and clinical management.
Whether you or a friend or family member have been diagnosed with LBD, or if you are a healthcare or service provider with questions about LBD, we are here for you and look forward to joining together to advance awareness, treatment, and information about this disease.