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Executive Director Position


The TANGO2 Research Foundation is seeking a dynamic and entrepreneurial-minded leader to serve as Executive Director. This is an exciting time to join our foundation to help create and cultivate an organization that makes a real difference and transforms the lives of TANGO2 patients and families. The mission of the TANGO2 Research Foundation is to lead the way in finding a cure for TANGO2 related disease by funding, coordinating and guiding scientific research.

This unique opportunity comes at a time when we’re poised to accelerate our mission by engaging a growing network of international families, doctors and researchers. We are honored to be one of the rare disease organizations selected to participate in the Chan Zuckerberg Initiative’s (CZI) first Rare as One Network cohort.  In this two-year program, CZI provides organizations with funding, training, community mentorship, and capacity building resources to enable and scale a model in which patients, researchers, and clinicians work together to advance progress against their specific rare disease.

Who are you?

You’re a passionatemotivated and driven individual who has held various leadership positions in other organizations and is now ready to assume a primary one. You have a proven track-record in the development space and are now ready to create a strong, sustainable fundraising story for the TANGO2 Research Foundation.

With a firm financial footing established, you will then use your visionenthusiasm and entrepreneurial spirit to grow the foundation by expanding our program offerings (primarily funding of research), growing our international network of families and researchers and hiring the staff to meet these demands and perform the important work that needs to be done.


Development & Fundraising

  • Drive a donor-centric, mission-driven culture, building relationships and implementing best practices to accomplish financial goals.
  • Execute fundraising strategies to raise budgeted goal from corporations, individuals, and foundations.
  • Proficiency with donor database software (e.g., data input, record updating, gift processing, report production).
  • Works with the Board on grant proposals, including government, corporate and family foundations.
  • Planning, coordinating, implementing and analyzing a comprehensive fundraising strategy with the President and Board of Directors
  • Developing and implementing a communications strategy for attracting and retaining supporters, sponsors and donors
  • Communication activities, including online newsletters, social media, and press releases
  • Attending Board meetings regularly and preparing monthly Development Reports for Board


Supporting the Foundation on the execution of core T2R Programs:

  • Continuing education and engagement of TANGO2 patient families
  • Maximizing participation of patients in the TANGO2 Natural History Study
  • Assisting with coordination and planning of biennial TANGO2 Family Conference
  • Implementation of Foundation’s grant funding program in support of medical research to further understanding around TANGO2 disorder
  • Helping advancement of early detection screenings and diagnosis
  • Implementation of marketing and communication plans to enhance visibility and increase community awareness and participation.
  • Participates in board and staff meetings as needed

Organization Operations

  • Enhancing, developing and implementing necessary policies and procedures
  • In coordination with the Board, identifying and planning for infrastructure growth to parallel growth of program
  • Effectively develop business systems and strategies and ensure appropriate implementation.
  • Ensure optimal financial performance of the foundation.
  • Assist Board of Directors with development and management of annual budget.

Minimum Qualifications

  • 3-5 years experience in fundraising, sponsorship solicitation, major and annual giving in a not-for-profit organization
  • Bachelor’s degree from an accredited college or university.
  • Experience working with board members.
  • Excellent verbal and written communication skills.
  • Ability to lead and work independently and as a member of a team.
  • International experience helpful
  • A commitment to diversity and inclusion

Additional Qualifications We Value

  • Passionate and motivated.
  • Forward thinking with an entrepreneurial spirit.
  • Resourceful and innovative.
  • Collaborative nature with focus on team development and collective success.

Location: This is a remote position. You’re free to work where you work best, anywhere in the US: home office, coworking space, coffeeshops. While we currently have an office in Connecticut, you should be comfortable working remotely.

Compensation: Negotiable.