Location: Remote/NY – Tri-State

Reports To: CEO

The Children’s Tumor Foundation (CTF) is the drug discovery engine for NF, a group of genetic conditions that cause tumors to grow on nerves. By bringing together patients, doctors, scientists, and  pharma, CTF drives treatments, advances care, and delivers faster results for millions affected by NF. NF refers to all types of neurofibromatosis and schwannomatosis, which collectively affect 1 in every 2,000 individuals.

General Summary

The Chief Scientific Officer is a key member of the Executive Leadership team and oversees the strategy, research, and programs of the Science and Education team to advance research, treatment, and advocacy for those affected by NF. The CSO will provide strong leadership and direction for all scientific and educational activities. This position will significantly drive the science, develop an effective preclinical strategy, and bring assets from bench to bedside. The CSO will lead the research, preclinical, clinical, and education teams. 

The CSO will act as a liaison to the NF research and clinical community and take an active role in preclinical and clinical development. The CSO will also lead the Education team and provide R&D expertise to the staff. This position is externally facing and works directly with pharmaceutical companies, government and private health agencies, medical societies, and healthcare companies to promote the mission of CTF.  

Principal Duties & Responsibilities

• Exceptional R&D leadership skills 
• Develop and implement CTF’s R&D  vision and research priorities.
• Stay at the forefront of emerging trends, technologies, and policies impacting NF R&D  and patient care including the latest results of clinical trials and publications. 
• Act as a key scientific advisor to the executive team and Board of Directors.
• Serve as a voice for patients and physicians. 
• Represent CTF and its programs to medical and regulatory communities and pharmaceutical and biotechnology industry collaborators and partners, i.e. conferences, etc. 
• Oversees the education, research, preclinical, and clinical teams. 
• Build and oversee the financial budget for research, preclinical,  clinical development, and key scientific educational activities. 
• Lead the development of research initiatives, including studies, clinical trials, and translational research efforts.
• Fosters collaboration between academia, biotech and pharmaceutical companies, government agencies, and patient advocacy groups.
• Responsible for setting objectives and priorities for the Medical Advisory Boards in collaboration with the CTF Europe CSO and CTF CEO.
• Work closely with development to secure funding through grants, private donors, and industry partnerships.
• Lead efforts to secure federal and private research funding, including NIH, FDA, and philanthropic grants.
• Manage and constantly optimize the R&D budget, responsible for informing CTF staff and the BOD of the latest applicable developments in NF through webinars, presentations and meetings.
• Collaborate with the Chief Growth Officer regarding the development of educational materials and funding impact reports for fundraising purposes.
• Serve as a core executive team member, and contribute to overall strategic planning and decision-making.
• Foster an organizational culture of scientific excellence, collaboration, and patient-centered innovation.
• Serve as CTF drug discovery specialist  to NF-relevant consortia (eg. INTUITT, EUPEARL, Clinical trials consortium, and REiNS)

Minimum Qualifications

• Ph.D., M.D., or equivalent in genetics, molecular biology, biomedical sciences, rare disease research, or a related field.
• Exceptional leadership skills
• Strong track record in industry (pharma/ biotech) R&D , preferably in the rare disease space.
• Demonstrable drug discovery and clinical development skills. 
• Strategic and innovative thinker with proven ability to communicate a vision and drive results.
• Ability to independently solve problems and execute on initiatives.
• Ability to work collaboratively internally and externally.
• Self-assured and results oriented.
• Experienced in and demonstrated successful leadership of case management, disease management, and/or population health programs.
• Demonstrated ability to assess business needs, design and implement programs and evaluate results.
• Proven track record of leading research initiatives and translating scientific discoveries into clinical impact.
• Strong knowledge of regulatory pathways, clinical trial design, and emerging therapies such as gene therapy, RNA-based treatments, and orphan drug development.
• Ability to communicate complex scientific concepts to diverse audiences, including policymakers, patients, and donors.
• Demonstrated ability to secure and manage research funding.
• Leadership experience, including managing teams and cross-sector collaborations.
• Deep commitment to rare disease research and patient advocacy.
• Experience working with the FDA, NIH, and regulatory agencies on rare disease policies and funding is a plus.
• Knowledge of nonprofit research funding mechanisms, including venture philanthropy and public-private partnerships.
• Strategic thinker with strong problem-solving skills and the ability to adapt to the rapidly evolving landscape of rare disease science.

Working Conditions, Equipment Used and Special Information

The CSO must have unimpeachable integrity and trustworthiness, while possessing a high degree of tact, discretion and professionalism.   Maintain effectiveness under pressure.  Flexible for moderate overnight business travel which may include weekends.

DISCLAIMER

The above statements are intended to describe the general nature and level of work being performed by the person assigned to this position.  They are not intended to be considered an exhaustive list of all responsibilities, duties and skills required.

Please reach out to Jennifer Ching, Human Resources Director at jching@ctf.org.