Science Program Director of the CSNK2A1 Foundation

CSNK2A1 Foundation is a patient-centered 501(c)(3) nonprofit organization focused on funding innovative, high-reward research with the potential to cure for Okur-Chung Neurodevelopmental Syndrome (“OCNDS”) and ensure affected individuals have the opportunities and support necessary for happy and full lives.  Founded in 2018, we are building a patient-led research coalition in which OCNDS patients and families play an integral role in identifying relevant clinical questions and patient-centered health outcomes, highlighting the diversity of needs within the OCNDS patient community and addressing diagnosis-related research challenges. 

We are seeking a Science Program Director (“Director”) who is a dynamic leader and will provide visionary leadership for all scientific efforts of the organization. This is an exciting time to join our foundation as you will further develop and cultivate our research program in which the outcomes will transform the lives of patients living with OCNDS, a rare disease discovered in 2016. 

This unique opportunity comes when we are positioned to accelerate our mission. Last year, we received a grant from the Chan Zuckerberg Initiative’s (CZI) Rare as One in recognition of our efforts and to help us continue our work.  We are using this grant to help fund our Science Program Director position.  Initially, the Director will facilitate a thorough analysis of the research landscape pertinent to OCNDS.   

Working with key stakeholders, the Director develops and implements the Foundation’s research initiatives and programs. The Director identifies and facilitates collaborative opportunities with academic institutions, pharma, biotech, patient advocacy organizations, and national and transnational government funding programs. The Director serves as the spokesperson for Foundation research activities and represents the Foundation’s interests at scientific meetings. The Director facilitates CSNK2A1/OCNDS research collaboration, encourages innovation, and ensures efficient use of Foundation resources to achieve the ultimate goal of treatments and a cure for OCNDS.  The position reports to the Foundation President and Board of Directors.

Role & Responsibilities include but not limited to:

• Facilitates a comprehensive research landscape analysis 
• Work with key stakeholders to develop the Foundation’s overall scientific strategy and research roadmap 
• Create strategic research goals, identify impact metrics and make recommendations that get us closer to translation research with treatment outcomes
• Develop and manage the Foundation’s grant program, including writing requests for applications, soliciting proposals, responding to inquiries, managing review process, and tracking progress
• Manage the Foundation’s grant application process, including collaborating with the research team to identify and apply for grant opportunities for the Foundation
• Engage with a diverse group of external partners and collaborators in academia, industry, and other nonprofit organizations to sustain and advance the Foundation’s high-impact portfolio of research programs
• Assist in the planning of scientific meetings, including Scientific Quarterly roundtables and our annual scientific workshop
• Communicate with patient community regarding current research and opportunities to participate, including presenting at gatherings and updating website and/or social media with news and advancements
• Serve as a scientific spokesperson for the Foundation, including representing the Foundation at scientific meetings and conferences 

Key Qualifications:

• Excellent verbal communication skills, including the ability to clearly articulate the purpose of meetings and other activities to potential participants
• Team player able to work independently and collaboratively with the scientific team and other key stakeholders
• Attention to detail with strong documentation, workflow management, and organizational skills
• Creative in approach to problem-solving with the ability to take advantage of emerging opportunities
• Proactive, with a strong work ethic and the ability to meet deadlines and understand priorities
• Excellent written communication skills, particularly in drafting and editing a variety of materials with scientific content (letters, grant proposals, summary documents), as well as preparing presentations with scientific and programmatic content
• Advanced proficiency with Microsoft Word, PowerPoint, Excel, Zoom, and Google Suite, in addition to online medical resource searching (e.g., Ovid, Medline, PubMed, etc.)
• U.S.-based with ability to work and schedule meetings across multiple global time zones
• Knowledge of the pharmaceutical industry, biotech, drug development, and FDA, and ability to relate scientific understanding to Foundation’s strategic needs. *In-depth knowledge is appreciated but not required
• Demonstrated commitment to diversity, equity, and inclusion, particularly as it concerns underrepresented perspectives in neuroscience

Education & Experience:

• PhD degree required, with at least two years of experience in post-doctoral work on scientific projects in an academic, industrial, non-profit, or government setting
• Clinical and/or basic science research experience required

Additional Details:

Job Type: Part-time, 1 year contract renewable and hoping to grow to Full Time in the future

Work Location:   Fully remote with occasional in-person travel to conferences and meetings.  Our central office is in San Francisco, California.

Salary & Benefits:

• Salary is competitive and will be commensurate with the qualifications and experience of the candidate
• Flexible schedule

Schedule:

• Day shift, part-time, Monday-Friday, up to 20 hours per week.  The daily schedule can vary based on project priorities and organizational needs.
• Occasional weekend and evening availability in a preplanned manner
• The anticipated/desired start date is February 2023

To Apply:

We are a dynamic, growing organization that embraces critical thinking, problem-solving and innovative ideas. If you have relevant experience and qualifications, please submit a thoughtful cover letter describing your qualifications, a brief bio (200-word limit), and your interest in the position, together with your curriculum vitae to: admin@csnk2a1foundation.org

We will begin to review applications starting January 9, 2023 and applications will be accepted until the position is filled.

Applicants who best match the position's needs will be contacted.

CSNK2A1 Foundation is an equal opportunity employer and does not discriminate in hiring or terms and conditions of employment because of an individual's race, color, religion, gender, gender identity, national origin, citizenship, age, disability, sexual orientation, marital status, or any other protected category recognized by state, federal, or local laws.