Organization Overview:

The Lewy Body Dementia Association (LBDA) is the leading national organization dedicated to improving the lives of those living with Lewy body dementia (LBD), their families, and care partners. LBD is the second most common form of neurodegenerative dementia and affects approximately 1.4 million people in the United States alone.

A 501(c)(3) non-profit organization headquartered in Georgia, LBDA’s mission is to optimize the quality of life for those affected by LBD by accelerating awareness, advancing research for early diagnosis and improved care, and providing comprehensive education and compassionate support.

The Opportunity:

The Community and Scientific Engagement Coordinator at LBDA will play a pivotal role in bridging the gap between people personally affected by LBD and scientific research in the field of Lewy body dementia. Reporting to the Director of Scientific Initiatives, this position involves developing and implementing programs and processes to engage the LBD community, increase volunteer participation in research, and support the engagement researchers in alignment with LBDA’s mission. The ideal candidate will be passionate about LBD research and patient engagement, possess excellent communication skills, and have experience in recruitment and retention for clinical trials, patient engagement in research, working with researchers and diverse populations.

Key Responsibilities:

Community Engagement:

• Develop and execute community outreach programs to increase volunteer participation in clinical research studies on Lewy body dementia, including but not limited to LBDA’s research ambassador program (CHAMP), clinical research study listings on the LBDA website, and LBDA’s research contact registry (Lewy Trial Tracker).
• Represent LBDA at public-facing events for people with dementia and movement disorders.
• Build and maintain relationships with the LBD community, community-based organizations, researchers, and other stakeholders.
• Assist in creating and distributing relevant materials and resources to the public, clinicians and researchers that foster increased research participation.

Scientific Engagement:

• Support and coordinate working groups of researchers focused on Lewy body dementia, including but not limited to ongoing working groups within the Research Centers of Excellence (RCOE) program, task forces, and small project-focused ad hoc groups.
• Assist in organizing events and forums that bring together scientists, LBD community members—i.e., people with Lewy body dementia and care partners—and research stakeholders
• Cultivate relationships with investigators leading LBD clinical studies that are recruiting or soon to be recruiting, with a goal of informing the LBD community of research participation opportunities.
• With support of the Director of Scientific Initiatives, stay abreast of clinical research advances in Lewy body dementia.

Administrative Duties:

• Support LBDA’s scientific engagement activities including but not limited to organizing committee and working group meetings, timely creation of agendas and dissemination of minutes.
• Maintain accurate records of community and scientific engagement activities.

Qualifications:

• Bachelor’s degree in relevant scientific area.
• Minimum of 3 years of experience working in the dementia or movement disorder field
• Experience in clinical trial recruitment and retention.
• Experience in patient engagement in research.
• Experience in engaging dementia researchers.
• Experience in working with diverse populations.
• Strong understanding of clinical trials and the ability to communicate complex information to a non-scientific audience.
• Excellent organizational, interpersonal, and communication skills.
• Ability to work independently and as part of a team.
• Passion for Lewy body dementia advocacy and improving the lives of those affected by Lewy body dementia.

Job Type: Full-time

Pay: $55,000.00 - $60,000.00 per year

Benefits:

• 401(k)
• Dental insurance
• Health insurance
• Paid time off
• Vision insurance

Schedule:

• 8 hour shift
• Monday to Friday

People with a criminal record are encouraged to apply

Work Location: Remote