Careers

STXBP1 Foundation is dedicated to finding a cure for STXBP1 Disorders while improving the lives of our patients and families. Founded in 2017, we are a parent-led 501(c)(3). STXBP1 Disorders are rare epileptic and neurodevelopmental disorders caused by changes in the STXBP1 gene. With an incidence of approximately 1 in 30,000 live births, STXBP1 Disorders are one of the most common genetic causes of epilepsy. Join us in our efforts to accelerate research and therapy development, and activate and support our community.

Open Positions

Executive Director

We’re looking for a highly skilled Executive Director to help us fulfill our mission. Reporting to the President of the Board of Directors, the Executive Director will oversee the strategy and manage operations of our programs, staff and organization. This seasoned leader will not only understand research-oriented, community-based non-profits but will also have experience in developing and implementing a successful fundraising plan. This position requires strong leadership, strategic planning, and operational management skills, as well as a passion for our mission.

Responsibilities

  • Oversee, in partnership with the Board of Directors, the reshaping of the Foundation into a more scalable organization with the capacity to advance our mission as the community of STXBP1 families grows

  • Establish goals, objectives, and operational plans in collaboration with the Board of Directors and the Scientific Director

  • Provide strategic leadership and hands-on management for administrative and operational functions of the organization

  • Work closely with the Board of Directors and committees, including attending all board meetings. Maintain regular communication to build strong relationships with the board, and provide all information necessary to assess and address issues affecting the organization and make informed decisions in a timely and accurate manner

  • Meet annual fundraising goals, in partnership with board of directors, by securing financial support and grants from corporations, individual donors and other sources

  • Drive successful fundraising programs, community building programs and events

  • Work with Scientific Director, Board of Directors, and outside subject matter experts to develop new content for education, engagement and marketing for both scientific and caregiver audiences

  • Oversee all external communications, including website, marketing collateral, newsletters, and social media, and be a primary spokesperson for the organization

  • Work closely with Scientific Director, Board President and Board Science Liaison to support execution of scientific strategy, programs and grant administration

  • Establish metrics and key performance indicators (KPIs) to monitor the organization's performance and impact. Regularly evaluate progress and make adjustments as needed

  • Build and administer the annual budget, with Board of Directors approval

  • Maintain and oversee implementation of new systems and applications required by the organization, including CRM and donor management

  • Build and lead an effective team that’s dedicated to fulfilling the organization’s mission through highly successful programs, community engagement, and fundraising


Qualifications

  • Five or more years of experience in senior management in rare disease and/or nonprofit organizations

  • Strong business acumen with an entrepreneurial mindset, and proven experience executing organization growth 

  • Experience in a research-oriented nonprofit or other organization highly desired

  • Excellent interpersonal and communication skills, with the ability to build relationships, collaborate effectively and problem solve with diverse stakeholders.

  • Knowledge of leadership, management principles and compliance for nonprofit organizations

  • Proven success working with a Board of Directors

  • Must be able to use or learn Classy, Google Suite, Canva, Squarespace, Slack, Zoom, and Mailchimp

 

To Apply: Send your resume with a cover letter to hiring@stxbp1disorders.org