Scientific Director (Director of Research & Scientific Strategy)
CSNK2B Foundation
Status: 1099 Independent Contractor
Start Date: March 1, 2026
Compensation: $75,000–$90,000 (1099 contractor; invoiced monthly) + performance-based bonus opportunity
Schedule: 20 hours/week (flexible, outcome-based)
Location: Remote (U.S.)
Travel: Estimated 4–6 trips per year
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About the CSNK2B Foundation
The CSNK2B Foundation is a family-led, patient-driven nonprofit dedicated to accelerating research and improving the quality of life for those affected by Poirier–Bienvenu Neurodevelopmental Syndrome (POBINDS), a condition caused by variants in the CSNK2B gene.
We are building the scientific ecosystem for progress by:
• Connecting families, clinicians, and researchers
• Catalyzing new research tools and therapeutic exploration
• Ensuring that patient experience drives scientific priorities
We also co-lead the CK2 Butterfly Collective, an initiative that unites both the CSNK2B and CSNK2A1 communities around shared biology, awareness, research resources, and collaboration.
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The Opportunity
We are seeking a Scientific Director who combines scientific rigor with relational leadership. Someone who can translate emerging science into strategy, build partnerships, and guide our research priorities with clarity, empathy, and forward momentum.
This is a builder’s role. Ideal for someone energized by creating research infrastructure where none exists, shaping a therapeutic roadmap, and helping move an emerging field toward meaningful treatments.
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Reporting & Structure
• Reports to: Executive Leadership / Board Co-Chairs (with day-to-day partnership with Executive Director)
• Collaborates with: Scientific Advisory Board (SAB), CK2 Butterfly Collective leadership
• May supervise: Research coordinators, students, volunteers, contractors, or fellows as capacity grows
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Key Responsibilities
1) Scientific Leadership & Strategy
• Develop and refine the CSNK2B scientific roadmap in partnership with Executive Leadership and the SAB
• Conduct landscape analyses to identify research gaps, tool needs, and translational opportunities
• Lead internal prioritization and decision-making frameworks for which projects to fund, launch, or partner on
• Oversee research project selection, scope definition, funding recommendations, milestone tracking, and scientific reporting
• Ensure adherence to ethical, regulatory, and data-governance standards (e.g., IRB, privacy frameworks)
• Lead development and/or oversight of registries, biobanks, natural history studies, and data-sharing systems
• Support development of shared science priorities and coordination across the CK2 Butterfly Collective
2) Research Development & Dissemination
• Contribute to or lead original research and collaborative projects, including peer-reviewed manuscripts when appropriate
• Translate scientific findings into accessible, accurate updates for families, policymakers, and funders
• Create scientific summaries and briefing materials for Board, donors, and community updates
• Represent CSNK2B at scientific, advocacy, and consortium conferences and working groups
3) Collaboration & Partnerships
• Build and maintain relationships with academic investigators, clinicians, biotech/pharma, and consortium partners
• Identify strategic partnerships to accelerate tool-building, data generation, and translational momentum
• Support collaboration with other rare disease foundations to leverage shared models, templates, and learning networks
• Act as a scientific connector across stakeholders—ensuring alignment, clarity, and productive next steps
4) Funding & Grants
• Identify and pursue grant opportunities (NIH, PCORI, foundations, industry partnerships) in coordination with leadership
• Support proposal development, scientific sections, budgets/justifications (as needed), and progress reporting
• Help design sustainable research funding structures and pipelines for organizational growth
• Bonus-eligible performance tied to successful grant wins, partnerships, and/or new funding sources (subject to nonprofit and funder compliance)
5) Community Engagement & Trust-Building
• Work alongside families to ensure lived experience meaningfully informs research priorities
• Provide clear, compassionate, transparent scientific updates to the community
• Support community education initiatives and ensure research language is respectful, accurate, and accessible
• Help strengthen two-way trust: listening to families and translating what’s feasible back into a clear plan
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6-Month Success Benchmarks
• Complete a comprehensive CSNK2B research landscape & tool gap assessment
• Identify 3–5 translationally relevant research priorities for 2026 with rationale and milestones
• Recruit 1–2 new members to strengthen the Scientific Advisory Board
• Help plan and execute the 2026 PCORI-funded convening- December, 2026
• Represent CSNK2B at two scientific or advocacy conferences
• Advance at least one joint research initiative with the CK2 Butterfly Collective
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Who You Are
• PhD (or equivalent expertise) in neuroscience, genetics, molecular biology, neurodevelopment, or a related field
• Experience with rare disease research, translational pipelines, and/or natural history studies
• Skilled at managing scientific collaborations and delivering research outputs on time
• Strong scientific writing and communication skills (academic and public-facing)
• Comfortable working independently, building structure, and iterating in an evolving organization
• Motivated by impact, humility, curiosity, and genuine partnership with families and clinicians
Preferred (not required):
• Experience with preclinical model development, therapeutic development, and/or regulatory pathways (FDA/EMA)
• Familiarity with patient registries, biobank governance, data-sharing agreements, or FAIR data principles
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Commitment to Equity
We welcome applicants from all backgrounds and lived experiences, including those historically underrepresented in science, patient advocacy, and leadership. Passion matters as much as publication count.
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To Apply
Please email your CV or NIH biosketch and a brief note sharing:
1. Why this role speaks to you
2. One idea you believe would accelerate progress in ultra-rare neurodevelopmental disorders
Send to: csnk2bfoundationus@gmail.com
Subject line: Scientific Director — CSNK2B Foundation