Join Our Board

Help Shape the Future of Decoding Developmental Epilepsies

DDE is seeking dedicated, visionary, and collaborative leaders to join our Board of Directors.

About Decoding Developmental Epilepsies

Decoding Developmental Epilepsies (DDE) is a community-driven nonprofit committed to accelerating improved outcomes for individuals and families living with SCN8A-related epilepsy and other severe developmental and epileptic encephalopathies (DEEs).

DDE is home to the International SCN8A Alliance, the Developmental and Epileptic Encephalopathy Project (DEE-P Connections), and the Inchstone Project. Our work is fueled by compassion, innovation, and a shared belief that together, we can create lasting change.

What We’re Looking For

We welcome individuals from diverse backgrounds who bring:

  • A strong commitment to our mission and values

  • Strategic thinking and sound problem-solving skills

  • Willingness to actively participate in board meetings and committees

To fully support our mission, we are especially seeking candidates with expertise in key priority areas.

Your Role as a Board Member

As a member of the DDE Board of Directors, you will:

  • Provide strategic guidance and organizational oversight

  • Serve as an ambassador for DDE’s mission and programs

  • Support fundraising and resource development efforts

  • Help ensure the sustainability of initiatives that directly impact lives

Learn more about the role of the Board and its committees

Why Join Us?

By joining the DDE Board, you will:

  • Make a tangible difference in the lives and outcomes of children affected by severe rare epilepsies

  • Be part of a mission-driven organization creating real and measurable change

  • Collaborate with passionate, dedicated leaders from diverse fields

  • Gain meaningful experience in nonprofit leadership and governance

Term Length: 3 years

Meetings:

  • Full Board meets virtually six times per year

  • Board committees generally meet in alternating months

Ready to Lead with Purpose?

If you’re ready to bring your skills, passion, and ideas to the table, we would love to hear from you. Please submit your application by clicking Apply Now below.

Or contact us to learn more: boardinfo@d-de.org