Chief Executive Officer

What You'll Do:

The CEO will serve as a visionary, strategic, and dynamic leader focused on the long-term growth and success of UMDF. Responsible for the development and execution of UMDF's strategic plan, the CEO will oversee a full-time team of 16 and a national network of 100+ ambassadors. The CEO will also serve as the leading external representative and advocate for patients and families affected by mitochondrial disease, and will devote significant time and effort to raising awareness and funds for the organization, strengthening existing relationships and cultivating new sources of revenue to grow its budget. This is an ideal opportunity for a highly strategic, collaborative, and empathetic leader to have a meaningful impact on mito patients, their families, and the scientific community.

Organizational Leadership

• Work in partnership with the Board of Trustees to develop, communicate, implement, and sustain a clear vision, mission, strategy, and suite of programs for the organization
• Drive organization-wide results with inspirational leadership, effective and supportive management, and well-defined objectives with accountability mechanisms and key performance indicators to track progress
• Establish and maintain a professional, motivating, and supportive team environment and organizational culture
• Ensure effective and responsible fiscal and operational management of the organization's $4.5M budget in collaboration with the Finance Committee and Director of Finance; be an effective steward of resources via disciplined budgeting and planning
• Represent UMDF in the community at large, serving as the senior most spokesperson for the organization and an advocate for the mito community in a range of contexts

External Leadership & Fundraising

• Collaborate with the development team to devise and implement a robust funding strategy with a focus on growth and diversification
• Identify, cultivate, solicit, and steward individual donors, foundations, corporate partners, and government agencies; raise funds from these sources to meet/exceed fundraising goals and serve as "asker in chief" as appropriate with major donors
• Lead UMDF's Venture Philanthropy efforts to identify and invest in early-stage companies developing therapeutics for mitochondrial disease
• Represent UMDF effectively with donors, partners, and other key stakeholders across a wide variety of settings (e.g. in the media, at conferences, and at other public/private events); play a leading role at UMDF's annual Mitochondrial Medicine Conference
• Work to actively promote awareness of mitochondrial disease and champion UMDF and its outcomes and accomplishments, with a goal of increasing brand awareness and support

Programming & Outcomes

• In partnership with the Science & Alliance Officer, develop, implement, monitor, and refine programs and initiatives to advance UMDF's dual mission of promoting research and education for the diagnosis, treatment and cure of mitochondrial disorders and providing support to affected individuals and families
• Ensure continued operational excellence and impact for UMDF's core programs (e.g. annual conference; virtual support services for patients and families; etc.) as well as new and innovative initiatives (e.g. the Venture Philanthropy fund to support potential therapeutic breakthroughs)
• Collaborate with key partners and stakeholders to address critical needs, issues, trends, and developments in the area of mitochondrial disease
• Manage and measure the growth, implementation, and continued excellence of UMDF's core programs while simultaneously investing in new and innovative initiatives to advance the organization's mission
• Evaluate programmatic efficacy and impact by monitoring key performance indicators as well as qualitative feedback from the mito community

Who You'll Work With:

The CEO will report to UMDF's Board of Trustees and work especially closely with the Board Chair. Additionally, the CEO will directly manage a senior leadership team of 5 and a total staff of 16, and will collaborate frequently with the Scientific & Medical Advisory Board (SMAB), Patient Advisory Council (PAC), and Industry Advisory Council (IAC). Learn more about the UMDF team here.

• At least 15 years of professional experience with at least 5 years of demonstrated senior leadership experience, with a strong understanding of best practices in nonprofit management preferred
• Deep experience in and understanding of the healthcare, health advocacy, and/or life sciences sectors; experience in the rare disease space is a plus
• Deep emotional intelligence and a compassionate, empathetic, collaborative, and supportive leadership style
• Strong strategic thinking, with a proven track record of developing and implementing integrated plans in pursuit of organizational goals; an innovative and creative approach to solving problems
• Experience and general knowledge of nonprofit finance; ability to create and manage budgets and set / observe financial controls
• Proven success raising funds from a variety of sources (e.g. institutional, individual, government, events, etc.), with a particular emphasis on closing major gifts
• Strong marketing, public relations, and external relations acumen with the ability to effectively engage a wide range of stakeholders
• Excellent organizational and people management skills with the ability to coach staff; manage, and develop high-performing teams; set and achieve strategic objectives; and drive implementation while ensuring operational excellence
• Proven experience scaling a team or program effectively and strategically, with sustainability in mind
• A sense of optimism, possibility, and energy to achieve UMDF's mission
• Relevant content knowledge, such as a scientific background and/or familiarity with mitochondrial disease, is a plus but not required

The United Mitochondrial Disease Foundation is an equal-opportunity employer. We encourage individuals from diverse backgrounds to apply.

Compensation: The salary range for this position is $175K - $200K; additionally, the CEO will be eligible for an annual performance bonus of up to 6% (based on mutually agreed performance objectives).

Location: UMDF operates in a hybrid fashion, with most of the team based in and around Pittsburgh, PA. As such, while the CEO can work from anywhere in the US, the East Coast is preferred, and candidates must be able to travel to Pittsburgh and have a presence with the team and at events as needed.