Position summary
The ARRE Foundation is looking for a part-time (approx. 20 hours/week) Chief Scientific Officer (CSO) to lead its research agenda. This role involves shaping research strategy, managing scientific projects, and collaborating with the ASXL research network to drive progress. The CSO will be responsible for setting priorities, managing grants, and identifying new research opportunities, all while working closely with our Executive Director. The position is remote with flexible hours.

What we’re looking for:

• Comfortable communicator: This role involves working with parent leaders with no scientific training. Patience and the ability to explain complex science in clear, layman's terms are essential.

• Collaborative spirit: The ARRE Foundation has developed a highly collaborative research network, and the CSO should be ready to work within this ecosystem, facilitating partnerships and expanding the network.

• Project management skills: Experience in managing scientific projects, such as animal model development, is a plus. The CSO should be organized, proactive, and comfortable overseeing multiple initiatives.

Key responsibilities:

• Lead and implement research strategy: Develop funding priorities, manage grants, and work directly with scientists to advance ASXL research.

• Build and support our research network: Strengthen connections with ASXL researchers and seek new collaborations, including with other rare disease organizations.

• Communicate effectively: Translate scientific findings into accessible language for our family community and report on progress to the board and stakeholders.

Ideal candidate:
We’re looking for a creative scientific leader with a strong background in neuroscience, clinical research, and translating basic research into practice. Prior experience in a nonprofit or patient advocacy organization is a plus. This is a hands-on role, perfect for someone excited to work in a collaborative, fast-paced environment where they can make a real difference for families affected by ASXL-related disorders.

Education:

PhD or equivalent in the biological, biomedical, neurosciences, pharmacology or drug development; exceptional candidates who are working on their PhD may be considered

Application requirements:

• Cover letter: Please explain why this role with the ASXL community interests you and how this role aligns to your research interests and professional goals

• Resume/CV

• References will be requested from final candidates

Please send all application materials Amanda Johnson, Executive Director, at amanda@arrefoundation.org.