The Manager of Genetic Initiatives will develop and implement AFTD initiatives related to genetic forms of FTD, to advance the quality of life of affected people and drive research to a cure. They will provide support to our community of FTD stakeholders, creating educational resources for families, healthcare providers, and researchers, serving as an internal resource on FTD genetics and the needs of genetic families, aiding and developing support (e.g., resources for support groups, info sessions, and connections), and empowering families to make informed choices about research participation. They will develop and implement mechanisms to represent the perspectives of people at risk or with genetic FTD to inform both AFTD initiatives and external decision-making on research. The Manager of Genetic Initiatives will engage equally in AFTD initiatives related to genetic FTD across research engagement and education/support.
Essential Job Functions
Genetic Education: In collaboration with directors and program managers, determine, develop, and implement education products and initiatives on FTD genetics for families and healthcare professional stakeholders. Ensure accurate, relevant, up-to-date content and delivery of genetic educational materials and products. Collaborate with AFTD communications team to produce high-quality materials and inform sensitive marketing of education initiatives.
Research Engagement: Under the direction of the Director of Research Engagement, develop and execute on initiatives to understand and represent the perspectives of people with or at risk of genetic FTD to research stakeholders across academic, industry, non-profit, or government organizations. Create tools to enable people with or at risk of genetic FTD to make informed decisions about research participation.
Empowerment and Relationship Building: Increase AFTD’s engagement with individuals living with FTD, families, health professionals, and researchers interested in genetic FTD through outreach, networking, education, and training activities. Develop a Genetic Family Advisory group to dialogue on the needs of people at risk or with known genetic FTD and to inform AFTD initiatives. With maximal involvement of affected family members assess for gaps in current programing to assist in the development and implementation of priority support initiatives to increase connections within the community.
Protection of Families: Develop guidance and practices for the protection of family / individual genetic information shared with AFTD staff, volunteers, and, on occasion, external organizations.
Subject matter expert for AFTD decision-making: With maximal involvement of affected family members, advise AFTD senior staff on the best ways to meet the needs of genetic families as part of our mission and strategic plan. Serve as an internal subject matter expert on FTD genetics and the needs of genetic families for relevant initiatives including but not limited to the HelpLine, support services, advocacy, research, and volunteer services.
Other Job Functions
As needed, represent AFTD at national, state, or local events
Conscientiously follow company policies and practices and take care of Company property
Occasional evening or weekend availability as needed
Travel for organizational meetings and events as needed (5%)
Other duties as assigned
This position is an individual contributor and does not have supervisory responsibilities.
Knowledge, skills, and abilities required for this role:
Master’s degree in Genetic Counseling
Board eligibility/ board certification
3+ years of experience in genetic counseling
Strong verbal and written communication skills required, with ability to understand and convey perspectives and information across all members of the FTD community including staff, volunteers, caregivers, persons diagnosed, clinicians and researchers
Minimum of 2 years of experience working with cognitive / behavioral impairment, neurodegenerative diseases, or rare diseases strongly preferred
Development and delivery of education programs strongly preferred
Strong attention to detail and time management skills.
Ability to collaborate on multiple concurrent projects with a range of stakeholders
Adaptable communication style, able to partner with staff, volunteers, healthcare providers, researchers, people diagnosed, and people from families with genetic FTD
Comfort with public speaking
Proven ability to maintain confidentiality
Proficiency in Microsoft Office suite; particularly Word, Excel and PowerPoint
Experience with database management and report generation preferred
Ability to be flexible and adaptable to work on a wide variety of projects; lending support where needed across departments, teams, and initiatives
Candidates able to commute to our King of Prussia, PA headquarters preferred
About The Association for Frontotemporal Degeneration
We are the leading organization dedicated to ending the most common form of dementia under 60, known as FTD. We help families affected today, and drive research to bring hope for the future. AFTD was founded by a volunteer in 2002. Empowering families to bring about change and make a difference in the lives of others in their communities is central to everything we do. We raise awareness to tell the world about a devastating, little known disease. We educate health professionals, helping them to provide responsive care in their communities. We fund leading-edge science and work with leading biopharma companies to advance research.