President and CEO

Reference: JOB986
Employer: The United Mitochondrial Foundation


The President and CEO position of The United Mitochondrial Disease Foundation (UMDF) is a national leadership position, based in Pittsburgh, PA. UMDF’s dedicated Board of Trustees is announcing the search as a result of the retirement of their current CEO and will seek a mission-centered leader to elevate the organization’s internal and external operations. The CEO will report to the national Board of Trustees and will supervise a talented and committed staff of 15. With an operating budget of more than $4 million, the CEO will directly participate in the fundraising effort of the organization and be the lead advocate for UMDF with patients, families, medical professionals, researchers, and the community at large.

The disease and the foundation

Mitochondrial diseases result from failures of the mitochondria, the specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail and the life of the person in whom this is happening is severely compromised. These diseases primarily affect children, but adult onset is becoming more and more common. Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney, and the endocrine and respiratory systems. Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays, and susceptibility to infection.

The mission of UMDF is to promote research and education for the diagnosis, treatment, and

cure of mitochondrial disorders and to provide support to affected individuals and families.

Members of the UMDF are able to network with other families and individuals to talk about mitochondrial disorders. The UMDF keeps members updated with the latest treatment advances and information through e-blasts and quarterly newsletters. UMDF members are able to find support on the local, regional, state, and international levels through various groups and ambassadors. The UMDF advocates on the national level and empowers members to advocate on the local level regarding issues of medical funding for primary mitochondrial disease research. UMDF organizes and leads an annual Symposium that is the cornerstone of their advocacy, research, and support services. Since 1996, the UMDF has provided nearly $20 million in grants to support research that may lead to a less invasive diagnosis and, ultimately, a cure. 

To learn more, please visit the website at

Position Overview

The new President and CEO of UMDF will be the successor to a legacy of respected and successful leadership. Following the tenure of Chuck Mohan, the CEO will be a transformative leader who drives the organization in achieving its core mission of uplifting the patients and families affected by mitochondrial disease through directly funding research, providing supportive services, and advocating for improved medical services and clinical research. The CEO will lead the Staff with the full support of the Board to strengthen the mission and programs while creating new programs to address the rapidly evolving landscape of Mito disease.

The CEO is expected to be a highly visible leader in the community, leading the conversation that is critical to the strengthening of research and services. The CEO will carry out strategies for revenue generation, marketing, partnerships, and advocacy.

We seek a leader with a deep understanding of the operational needs of a nonprofit and empathy for the challenges faced by people served by the organization. Strategic thinking, innovation, and courage are required to catalyze the delivery of outstanding outcomes. We seek an experienced leader that can navigate relationships with families, funders, and partners.

The President and CEO is primarily responsible for the following:

Leadership and Management

  • Assures the UMDF effectively achieves its mission by providing leadership and programmatic innovation. This includes day-to-day operations, fundraising, fiscal management, and program development.
  • Manages the Staff with transparency and respect, creating a workplace that is professional and positive.
  • Uplifts programming to remain relevant, diverse, excellent, and consistent.
  • Seeks opportunities for collaboration and cooperation with similarly missioned organizations.
  • Responds to the needs of patients and families in partnership with Staff.

Revenue Generation and Community Relations

  • Builds partnerships with philanthropic foundations, community organizations, individual donors and political, corporate, and community leaders.
  • Identifies and cultivates relationships that will advance the development and resource acquisition efforts of the UMDF.

Board Relations

  • Develops, maintains, and supports a high-performing and passionate Board of Trustees.
  • Develops and tracks metrics which monitor the performance of the organization with respect to the mission and key objectives of the organization.
  • Provides leadership in developing organizational, program, and financial plans with the Board of Trustees and carries out plans and policies authorized by the Board.

Program Innovation

  • Oversees the priority programs of research funding, patient and family services, and public advocacy to maximize the community impact of each program.
  • Works cooperatively with partner organizations to ensure that the advocacy and policy needs of the Mito community are being met.
  • Understands and supports the urgent nature of the work on behalf of families affected by Mito disease.
  • Introduces new program concepts to the Board as a response to community need.

Knowledge, Skills, and Abilities

The President and CEO will lead with an appreciation of the tremendous impact UMDF makes in the community. All candidates should have exceptional and proven nonprofit management, leadership, relationship management, and resources development experience, as well as possess a combination of the following attributes:

  • Educational background that includes a Bachelor’s degree. An advanced degree is preferred.
  • A demonstrated passion for the unique nature of rare disease research and the urgent needs of families.
  • A successful track record with creating and maintaining relationships with donors, funders, and community partners.
  • A sense of entrepreneurial opportunism with the ability to adapt with changing conditions.
  • Adept at building effective teams and motivating others to achieve more, particularly in complex and dynamic organizations. Working style that is transparent, encouraging, and collaborative.
  • Past success working with a Board of Trustees.
  • Strong written and verbal communication skills; a persuasive and passionate communicator with strong public speaking ability.
  • Commitment to quality programs and data-driven program evaluation.
  • Integrity and trust beyond reproach. Composure in all situations, even when under stress. Adheres to an appropriate and effective set of core values and beliefs.
  • Interpersonal skills including the ability to motivate, negotiate, and persuade stakeholders into a course of action in a community context.

Performance objectives

In the near term, the President and CEO will be expected to continue to deliver outstanding outcomes while successfully addressing and meeting the following:

  • Be strong and courageous in setting priorities for the organization that are based in data-driven information; stay within the mission of the organization; be creative/innovative.
  • Understand and embrace the critical role of UMDF as a trusted community resource and bridge between the families of the community as well as research and medical professionals.

How to Apply

UMDF has retained Nonprofit Talent to assist with this important organizational change process. Specific questions related to the position may be emailed to Michelle Pagano Heck, Principal, at Applications are not accepted at this email address. Please direct all inquiries related to this position to Nonprofit Talent, and do not contact UMDF.

Resume, position specific cover letter, and salary expectations may be uploaded here:

APPLICATIONS ARE DUE BY 5PM on February 9, 2018

UMDF is an equal opportunity employer.


Posted January 15, 2018