Manager of Genetic Initiatives

  • 2700 Horizon Dr, King of Prussia, PA 19406, USA
  • Full-time

Company Description

About the organization:

Looking to build a career in nonprofit? Join AFTD, the leading organization dedicated to ending the most common dementia under 60, known as FTD. We help families affected today, and drive research to bring hope for the future. Empowering thousands of donors each year to make a difference in the lives of others is key to every aspect of our mission. Our work to bring about a world without dementia is only missing your passion and your expertise. AFTD is growing rapidly, with a greater ability to offer help for those affected than ever before. By applying for this essential role, you can take the next step in your career, and make a difference for others.  

Job Description

About the role: 

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 local to our King of Prussia, PA headquarters preferred

Additional Information

The Association for Frontotemporal Degeneration requires all new employees to present proof they are fully vaccinated against COVID-19 before they start work. Currently, “fully vaccinated” is defined as someone that has received both doses of the Pfizer/Moderna COVID-19 vaccines or one dose of the Johnson & Johnson COVID-19 vaccine 14 days or more before they begin work. Individuals with a disability or a religious reason preventing them from taking the vaccine may request an accommodation. 

  • AFTD offers a competitive salary and generous benefits package. This is a hybrid position, with the option to work remotely up to 3 days per week.

AFTD is committed to creating a diverse environment and is proud to be an equal opportunity employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, gender, gender identity or expression, sexual orientation, national origin, genetics, disability, age, or veteran status. All of your information will be kept confidential according to EEO (Equal Employment Opportunity) guidelines. 

If you are interested in learning more about this unique opportunity, please submit your cover letter and CV.