Project 8p Foundation
Board Member Job Description
About Project 8p
Founded in 2018, the Project 8p Foundation is the only organization in the world dedicated to a rare and complex disorder caused by rearrangements of 250+ genes on the short arm of chromosome 8 (8p). These genetic changes disrupt the neurological system—impacting every organ and function of the body—and cause lifelong challenges in cognition, motor skills, social development, and more.
Mission: To empower a unified community for chromosome 8p heroes for a meaningful life today while accelerating treatments for tomorrow.
Our mission priorities:
• Accelerate transformative science – Fund pioneering research into treatments for 8p disorders, with potential breakthroughs for other chromosome conditions.
• Lead with the patient voice – Ensure patient needs drive every decision.
• Challenge the status quo – Break down silos, misaligned incentives, and outdated systems to speed progress toward cures.
With less than 5% of rare diseases having an FDA-approved treatment, we know we must do things differently. As a patient-led organization, we’ve earned the trust of affected families worldwide and united a once-dispersed community into a movement for change.
The Opportunity
We are seeking mission-driven leaders to join our Board of Directors as strategic thought partners to our Executive Director. Board members will help guide organizational growth, expand impact, and bring us closer to a cure.
Ideal candidates:
• Share our passion for improving lives affected by 8p disorders.
• Bring strategic, growth-oriented leadership experience.
• Champion our mission through partnerships, fundraising, and advocacy.
• Commit to understanding the science, treatments, and patient challenges we face.
Board Member Responsibilities
- Strategic Leadership: Advise the CEO and leadership team, contributing expertise to strategies, policies, and business plans.
- Mission Understanding: Develop deep knowledge of our mission, programs, policies, and needs. Stay informed on treatments, research, and patient experiences.
- Fiscal Stewardship: Review and understand financial statements to ensure strong oversight.
- Active Engagement: Prepare for and participate in board and committee meetings. Contribute to informed discussions and sound decisions.
- Advocacy & Ambassadorship: Represent Project 8p publicly. Leverage networks to build awareness, support, and opportunities.
- Philanthropic Commitment: Make a meaningful personal financial contribution each year and support fundraising campaigns.
- Network Development: Identify and connect potential donors, partners, and influencers. Support public policy initiatives aligned with our mission.
Skills, Experience & Attributes
| Skills (Technical Competencies) | Preferred Experience | Attributes |
| • Fundraising & Development • Legal (nonprofit, healthcare, IP, regulatory) • Drug Repurposing • Clinical Trials & Regulatory Strategy • Clinical Expertise • Finance (nonprofit accounting, investment planning) • PR & Communications • Human Resources (team development, equity)
|
• Nonprofit Strategy & Governance • Health Industry (biotech, pharma, health tech) • Scientific or Medical Insight |
• Entrepreneurial Mindset • Strategic Thinker • Collaborative Spirit • Patient-Centered Focus |
Commitment & Terms
Term: 3 years (renewable once)
Meetings: Quarterly board meetings plus committee participation
Philanthropy: Make a meaningful annual contribution and support fundraising efforts
Compensation: Unpaid; travel and board-related expenses covered
What You’ll Gain
- Work alongside world-class scientists, innovators, and advocates
• Accelerate treatments for a complex rare disease
• Influence systemic change in rare disease research
• Help improve the lives of children and families globally
📩 To Apply: Send a letter of intent and resume to Lauren Chaby, Executive Director – Lauren@project8p.org
🌐 Learn more: www.project8p.org
