The RUNX1 Research Program (runx1.com) is a nonprofit committed to finding a cure for RUNX1 FPD/AML, a hereditary blood disorder that predisposes to leukemia. Since inception in 2016, the two founder-directors have funded over $4 million in cutting-edge leukemia research, gathering the most prominent leukemic researchers in the world together to direct their focus to our cause. We are seeking an entrepreneurially-minded, organized, and can-do Executive Director with a background in science, medicine and/or health to take what has been built and maximize the potential. On the brink are a number of groundbreaking initiatives that are poised and ready for the right Executive Director to lead. This is a unique opportunity for an individual who embodies the characteristics of a successful executive or entrepreneur in the for-profit world, yet who wishes to apply his/her skillset to make a measurable social impact at the intersection of medical and technology.
The Executive Director will work with the two founder-directors and scientific director, Dr. Nancy Speck of the University of Pennsylvania, to manage the organization. The directors are looking for an organized, entrepreneurially minded, “can-do” individual who prefers to work at a start-up pace and with likeminded people. Non-profit experience is therefore not required; rather, the right candidate will possess an alignment of purpose and ethos with the directors.
Key near-term initiatives include:
- Building out a patient community. Although considered an orphan disease, RUNX1 FPD/AML has been historically under-diagnosed. To advocate for patients, we need to source every potential patient/family and to create meaningful dialogue among them. This includes patient and clinician recruitment for the below-mentioned NIH RUNX1 Center and Study.
- Directing a first-in-its-kind partnership with the NIH of a longitudinal dataset of pre-cancer genomic and clinical data in order assess and understand RUNX1 disease biology and progression from the inherited mutation to cancer, informing and driving future research initiatives.
- Interfacing with leading leukemia researchers worldwide. Determine what tools these researchers require to accelerate their research and implement these plans.
- Sourcing and securing long and short-term funding beyond the founder-directors’ funds in order to expand and accelerate our potential.
- Raising the public profile of the organization, increasing the general awareness of our cause.
Working with the two directors, the Executive Director will continue to review the strategic direction of the organization, moving the organization toward a new level of impact. As one of the few currently-known cancers with an identified genetic origin, research findings stand to benefit the larger leukemia and inherited cancer realms. The Executive Director will coordinate and help run our annual conference(s), bringing together our grant awardees and other prominent and relevant scientific and medical researchers of the field. The candidate will work with the directors and our IT consultants to update and manage social media, to maintain an on-line patient registry, and to keep our website current with relevant content that is well-presented and well-written. A successful candidate will be self-motivated, resourceful and articulate, work and collaborate well with the directors, write and communicate well, and be flexible in working through the challenges of a growing organization.
Management & Administrative
- Oversee and manage all aspects of day-to-day operations, including telephone calls, emails, oversight of office administration (auditors), finance (wire transfers), legal counsel, human resources, website and patient resources, and social media.
- Work with the two directors to develop and implement a plan to diversify the organization’s revenue stream beyond the founders’ personal funds. This will include using social media, approaching foundations and applying for relevant grants, developing tools for affected patients to raise funds, and harnessing the power of nontraditional/new fundraising initiatives. Candidate will oversee and manage an outsourced grant writer.
- Manage and direct RUNX1’s marketing and public relations efforts through social media and other vehicles to increase awareness and advocacy, ensuring we have a consistent, powerful and clear message aligned with our mission and vision.
- Work closely with the directors, scientific director, and scientific advisory board to consider the organization’s strategic direction. Identify, manage, and cultivate strategic partnerships.
- Manage the planning and oversight of our conferences.
- Play a visible role in the rare genetic disorder and cancer worlds to raise our organization’s awareness, ensuring that our message and successes are effectively communicated through conferences and social media.
- Maintain and grow a strong, useful website as a resource to patients and families, implementing strategies to become a comprehensive source for information on the disorder, treatment options, the current state of research, and anything else that may be relevant and support the community.
- Develop a patient advisory board and coordinate the advisory board’s activities which may include local, “smaller-scale” events, fundraisers or educational events. Field calls from patients who may wish to reach out to the organization to learn more about the disease and how the organization can assist them.
- Work with the directors to help write and distribute quarterly newsletters and mailing list correspondence, and with the Patient Advisory Board to create patient resources such as a ‘handbook’ for living with RUNX1.
- Create a fundraising strategy to expand upon revenue streams. Research advances in innovative fundraising and revenue generation for non-profits to inform future programming. Identify relevant foundations, grant programs, potential donors and implement suitable fundraising initiatives.
The Executive Director will be committed to The RUNX1 Research Program’s mission and aims. Supported by our Scientific Director, a world-leader in this field, and our Scientific Advisory Board, the ideal candidate should be conversant with scientific and medical terminology, ideally holding a PhD in a related field. The successful candidate will have proven leadership, relationship management expertise, time-management and organizational skills. In addition, superior attention to detail and work ethic is a must for this position.
Additional experience or qualities include:
- Advanced degree required.
- Experience with or knowledge of the medical, scientific research, health or pharmaceutical world.
- Demonstrated experience at an Executive/C level.
- Experience in an entrepreneurial environment and/or organization-building.
- Detail-oriented with exceptional written and oral communication skills.
- Ability to work effectively in collaboration with diverse groups of people.
- Strong computer and research skills, including the ability to make clear and effective spreadsheets.
- Financial management experience. (Budget development and management.)
- Strong leadership skills with a style that encourages growth, creativity, a can-do attitude, accountability, collaboration, and problem solving.
COMPENSATION AND LOCATION:
$200-300k per year commensurate with experience.
The position will be based in Santa Barbara, CA.
FOR MORE INFORMATION OR TO APPLY, PLEASE CONTACT:
Timothy Babich, Director, RUNX1 Research Program,
An introductory/cover letter explaining how you would be the ideal candidate along with a CV/resume should be included.
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