Development Coordinator

About Decoding Developmental Epilepsies (DDE)

(DDE) is a nonprofit organization at the forefront of accelerating research, advocacy, and outcomes for rare developmental and epileptic encephalopathies (DEEs). We have two core areas of focus:

1. SCN8A-Specific Focus: Driving groundbreaking research and therapies for the full spectrum of SCN8A and leading collaborative efforts across all stakeholders, through initiatives like the

2. DEE Community Leadership: Uniting over 45 rare epilepsy advocacy organizations to address shared challenges and foster transformative research and collaboration through and the

Founded by caregivers, DDE serves as a trusted resource for families, researchers, clinicians, and industry leaders working to improve treatments and quality of life for those impacted by these disorders.

Position Description

The Development Coordinator will work closely with senior management and other staff to lead fundraising and other aspects of resource development. The ideal candidate would have 5+ years experience in a fundraising and development role that includes individual donor work, corporate and foundation fundraising. Writing skills are paramount.

This position will start at a 50% level of effort with the possibility of growth as our portfolio expands. The Development Coordinator will also manage an employee who will help execute development tasks at their direction and with their oversight.

Fundraising Strategy & Management

• Develop and execute an annual fundraising plan aligned with organizational goals.
• Manage a diversified revenue portfolio including individual giving, major donors, corporate sponsorships, foundation and government grants, events, and online fundraising.
• Track fundraising metrics and prepare regular progress reports for leadership and the Board.

Individual & Major Donor Development

• Cultivate, solicit, and steward relationships with existing and prospective donors.
• Create personalized engagement strategies for major donors.
• Support the Executive Director and Board in donor meetings and solicitations.
• Ensure consistent, timely donor acknowledgment and stewardship.
• Maintain accurate donor records within the CRM database.

Grant Writing & Foundation Relations Support

• Support researching, writing, and submitting compelling grant proposals and LOIs.
• Manage a calendar of deadlines, reporting requirements, and stewardship for foundation and government funding.

Corporate & Community Partnerships

• Develop corporate sponsorship packages and partnership opportunities, especially with

biotech, pharma, and healthcare organizations relevant to the rare-disease community.

• Cultivate relationships with community groups, companies, and peer nonprofits to broaden support.

Campaigns

• Lead organization-wide fundraising campaigns (e.g., Rare Disease Day, year-end giving).
• Communications & Donor Stewardship
• Work with the team to produce donor-focused messaging and materials.

Staff Supervision

• Manage Development Staff

Organizational Leadership

• Serve as a strategic partner to the Executive Director and Board on revenue planning.
• Additional duties as assigned.

Qualifications

• BA/BS Degree
• Minimum of Five years of experience in a professional, preferably non-profit, environment
• Exceptional writing and proofreading skills; ability to translate technical information into lay language; experience in developing and organizing proposals for varying audiences
• Demonstrated excellence in organizational skills and attention to detail; ability to help drive projects to completion and multi-task
• Demonstrated analytical and critical thinking skills. Ability to use good judgment, take initiative and make recommendations in resolving problems and provide guidance to staff
• Knowledge of, or experience in, online fundraising, nonprofit advocacy, membership cultivation and marketing is a plus

Other preferred characteristics

• Eagerness to learn and contribute to a small team
• Creative and compelling storyteller
• Sense of urgency
• Collaborative
• Results driven
• Resourceful
• Observant and intuitive
• Proactive
• Self-aware
• Self-starter, dynamic and able to thrive in an unstructured environment
• Responsive to direction and feedback
• Ability to work independently and remotely with a diverse team

As a small, lean organization, all team members are required to take on additional responsibilities as necessary, including administrative tasks, as they arise. An ideal candidate would thrive in a team environment focusing on “getting things done” and supporting the work of others.

How to apply: Email a cover letter and resume to jobs@d-de.org by May 10th, 2026

Job Type: Part-time

Pay: $15,000.00 - $30,000.00 per year

Benefits:

• Flexible schedule

People with a criminal record are encouraged to apply

Work Location: Remote