Chief Science Officer Position

 

Chief Science Officer 

September 2024

 

The Opportunity

The Chief Science Officer will play a pivotal role in helping to define the research strategy for the KCNQ2 Cure Alliance (KCA). We are seeking a highly motivated candidate to lead multi-faceted research programs in academia or industry to accelerate moving discoveries out of the lab and into clinical development across multiple therapeutic modalities (drug repurposing, small molecules, gene therapies, etc). The candidate will be responsible for implementing the research-related objectives of KCA’s new Strategic Plan. This individual will have the unique opportunity to devise high-level scientific strategies, plan and implement specific projects, and communicate results to all KCNQ2 stakeholders, including families affected by KCNQ2-related disorders.

The CSO will also provide scientific oversight to KCA’s research grant programs throughout the pre-award, application review, and post-award process. They will also work with staff to develop strategies to continually improve the grant administration process. 

This is a remote, part-time role, although we will consider up to 40 hours weekly, contract role with a negotiable hour rate based on the agreed-upon schedule.

 

Organizational Background

Launched in 2015 by parents of children with KCNQ2-DEE, the KCNQ2 Cure Alliance is a 501(c)(3) non-profit organization whose mission is to accelerate research, build community, and advocate to improve the lives of those affected by KCNQ2-related disorders around the world.

 

Key Responsibilities

Research Program Innovation and Cultivation  

  • Develop and update a Research Roadmap, develop and update the research portion of the strategic plan, and cultivate, and grow our research programs.

 

Industry and Academic Engagement/Partnerships

  • Present research developments to the Board; facilitate and design plans for research roundtables; host interactive family community updates.
  • Facilitate partnerships with science advisors, biotech visionaries, nonprofit champions, and creative minds.
  • Attend industry meetings, conferences, and symposia.
  • Secure industry funding for events and projects adjacent to industry partners.
  • Supply tools to de-risk drug development for KCNQ2.
  • Lead research-oriented meetings and dynamic webinars relevant to the field that drive innovation, collaboration, and transformative change.
  • Foster strategic partnerships within the rare disease arena; travel to patient advocacy events, speaker programs, and conferences.
  • Communicate with the patient community regarding current research and participation opportunities, including presenting at gatherings and updating the website and/or social media with news and advancements.
  • Review each publication on KCNQ2 and engage primary publishing author(s); summarize key points for lay/patient audience for website/newsletters.
  • Facilitate and design plan for research roundtables
  • Generate increased interest in KCNQ2-related disorders among researchers and industry and identify promising treatment approaches for KCA support
  • Identify drivers of value proposition for KCNQ2 drug development
    • Develop tools (such as new clinical endpoints, patient stratification, etc.) to de-risk drug development for KCNQ2
    • Educate potential partners about KCNQ2 

 

Strategic Leadership

  • Identify and solicit new research projects and investigators, design experiments and milestones, oversee existing and new program effectiveness, and evaluate sponsored research projects.
  • Establish and manage the Request for Applications (RFA) process and research network of Principal Investigators (PIs).
  • Exhibit analytical prowess and strong project management skills, including budgeting and successful implementation of projects.
  • Exhibit analytical prowess and strong project management skills. This includes budgeting and the successful implementation of projects.

 

Lead the Charge in Research

  • Organize meetings and webinars relevant to the field that drive innovation, collaboration, and transformative change. Foster strategic partnerships within the rare disease arena and travel to patient advocacy events, speaker programs, and conferences. 
  • Communicate with the patient community regarding current research and opportunities to participate, including presenting at gatherings and updating website content and/or social media with news and advancements.

 

Manage Grant Programs 

  • Writing requests for proposals, soliciting proposals, responding to inquiries, formatting applications, managing the review process, assisting in negotiating contracts, tracking progress, maintaining the database of publications, and following up at mid-term and project completion
  • Write and submit proposals for presentations, workshops, or symposia at professional conferences.
  • Grant Making and Evaluation: Identify and solicit new research projects and investigators, design experiments and milestones, oversee existing and new program effectiveness, and evaluate sponsored research projects. Establish and manage the Request for Applications (RFA) process and research network of Principal Investigators (PIs).

 

Data Collection and Analysis Methods

  • Proficiency in considering innovative approaches to patient data collection and real-world evidence, such as video for gait analysis or other skills to monitor patients longitudinally with or without an intervention.

 

A Plus

  • Clinical Trial Readiness: Demonstrated expertise in clinical trial readiness, including protocol development, patient recruitment, or regulatory compliance.

 

Professional Qualifications

  • Knowledge of genetics (especially KCNQ2 and other ion channels), epilepsy, and/or other rare neurological diseases
  • Demonstrated ability to analyze complex scientific information, with quantitative and qualitative analysis skills
  • Familiarity with translational research and design and management of clinical studies
  • Strong written, oral, and interpersonal communication skills, including the 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
  • Excellent technical computer skills, competent with Microsoft Office, Google Tools, project management software, and database software
  • Proficient in troubleshooting and conflict resolution skills.
  • Proven track record in securing grant funding
  • Experience identifying biomarkers and clinical endpoints
  • Familiarity with science and research program budget preparation, analysis, and strategic decision-making
  • Creative, charismatic, honest, and has a sense of humor
  • Knowledge of NIH rating scale, peer review, and statistics calculations
  • Able to travel 4x/year at minimum

 

Education:

  • PhD or equivalent in the biological, biomedical, neurosciences, or genetics 
  • U.S. citizenship or permanent residency required

 

Work Experience:

  • 2 to 5 years of post-graduate experience working on scientific projects in an academic, industrial, or non-profit
  • Transparent and high-integrity leadership in a collaborative setting with a team in a lab, advisory board, or similar
  • Highly motivated and interested in rare disease research and cellular biology of modeling disease
  • Prior experience with preclinical and clinical studies, drug development, or pharmaceutical/biotech industry
  • A plus is experience working or interacting with a research-oriented or patient advocacy nonprofit organization.

 

Application Requirements

  1. Cover letter
    1. Please explain what is compelling you to work on a complex rare disease and why you are interested in this position at a rare disease foundation.
    2. Please provide a brief description of your research interests and short-term and long-term goals.
  2. Resume/CV

To apply: Please send your resume and a cover letter describing your interest in this position to scotty@kcnq2cure.org. Include “CSO Application” in the subject line of the email. Applications submitted via email will be reviewed on a rolling basis. Applications submitted via LinkedIn will NOT be reviewed.