Chief Scientific Officer

Position: Part-time
Location: Remote
Reports to: Executive Director
Posting date: March 1, 2024

Position summary

The ARRE Foundation is seeking an experienced and creative scientific thought leader to serve as the ARRE Foundation’s first Chief Scientific Officer (CSO). The CSO is an executive position that reports directly to ARRE Foundation’s Executive Director, with responsibility for leading development and implementation of a rigorous research agenda focused on driving ASXL research, improving clinical care for patients, educating the ASXL community, and collaborating across disciplines to identify new research opportunities. The CSO will work closely with the Executive Director and other key stakeholders in all aspects of the research process, including the identification and prioritization of research questions for funding, initiation of clinical care, and community outreach programs. This position is part-time (anticipated 20 hours/week) with the flexibility to work remotely.

Candidates should have training and familiarity with basic neuroscience, clinical research, and experience with the translation of basic research into clinical practice. Direct experience in conducting empirical research, either experimental or observational, and experience in conducting translational research is strongly desired. A strong record of creative thought leadership in research and initiating collaborative opportunities amongst academics and industry partners is highly desirable. The CSO will have the unique opportunity to devise high-level scientific strategies, plan and implement specific projects, and communicate results to all ASXL stakeholders, including families.

Ideal candidates will be excited by the opportunity to:

• Bring new insights and developments in ASXL research to the family community and explain the significance of these developments in lay terms

• Catalyze progress toward treatments for ASXL-related disorders by contributing to the connections and collaborations that will advance research toward therapies and treatments

• Take a leadership role and serve as active member of a vibrant, collaborative community of affected families, clinicians, scientists and other partners in the rare disorder community

 This is an active role in a small, growing nonprofit organization. The ideal candidate will be comfortable not only developing and leading strategy, but also executing the hands-on work required to implement it.

Key responsibilities:              

The Chief Scientific Officer is responsible for leading the ARRE Foundation’s research agenda in three key areas:

1. Expand the ASXL collaborative research network

• Build the ASXL research community through personal outreach, attendance of meetings/symposia, and coordination of quarterly virtual roundtable discussions 

• Regularly review the scientific literature to identify new opportunities for ASXL researchers, expand the research network, and identify novel therapeutic avenues and strategies

• Actively seek and support collaborations with other rare disease groups to identify areas of synergy and collaboration, including scientific projects and collaborative grant mechanisms

• Develop relationships with new scientific advisors, biotech visionaries, nonprofit leaders and other creative thought leaders to bring additional innovation to the research and patient/family community

• Attend select scientific and patient advocacy conferences for rare, neurodevelopmental disorders as requested (virtually and 2-3 in-person meetings annually)

2. Lead the ARRE Foundation’s research strategy

• Manage the ARRE Foundation’s portfolio of funded research grants, including the Request for Applications (RFA) process, grant decisions, and grantee management (including executing research agreements and tracking grant reports and resulting publications/presentations)

• Manage small ARRE Foundation-led studies to gain insights from the family community (including IRB approval, data analysis and publication where applicable) 

• Interact regularly with ASXL scientists and clinicians to manage and facilitate ongoing research projects including publication opportunities

3. Serve as the primary staff liaison for research-related initiatives

• Manage the engagement of the volunteer Medical and Scientific Advisory Board, including coordinating monthly meetings and follow ups

• Support the ASXL family community by sharing research developments in lay terminology and hosting regular (i.e. monthly or quarterly) interactive family community updates

• Organize the program for the annual ASXL Research Symposium (scientific content for researchers) and science-related content for the biennial ASXL Family Conference (lay content for affected families)

• Actively seek sponsorship and funding opportunities; lead and/or support the development of funding pitches and proposals

Qualifications:

The Chief Scientific Officer will have:

• PhD or equivalent in the biological, biomedical, neurosciences, pharmacology or drug development

• Demonstrated ability to analyze complex scientific information, with quantitative and qualitative analysis skills

• Strong written, oral, and interpersonal communication skills, including ability to effectively communicate scientific information to lay audiences

• Strong organizational abilities including effective planning, prioritization, delegation, program development and task facilitation

• Ability to network in relevant fields (academia, industry, drug development partners)

• Proven track record in securing grant funding

• Comfortable with a start-up mindset with the ability to work independently and with limited oversight and direction

• Familiarity with science and research program budget preparation, analysis, and strategic decision-making

• Creativity and personal dynamism

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

• 3 professional references (Name, title, email address)

Please submit all materials to Amanda Johnson (amanda@arrefoundation.org).