United Mitochondrial Disease Foundation (UMDF) powers the research, education, & support that advances treatments for those affected by mitochondrial disorders.

About the Organization

For more than 25 years, UMDF has built a network of the top clinicians, hospitals and researchers dedicated to fighting mitochondrial disease – a group of disorders that occur when mitochondria in cells don't produce enough energy. When cells die as a result, organ systems begin to fail and even stop functioning, resulting in a spectrum of symptoms and abnormalities that can affect almost any part of the body. There is currently no cure for mitochondrial disease, but treatment can prevent life-threatening complications.

UMDF is proud to be the world's largest non-governmental funder of research and education for the diagnosis, treatment and cure of mitochondrial disorders, as ongoing research and clinical trials offer the best hope for quicker diagnoses and more effective treatments. In addition, UMDF is powered by a nationwide community of ambassadors focused solely on supporting patients and families affected by mitochondrial disease. Through our research grant program, venture philanthropy fund, new patient toolkits, support line, and other initiatives, we are committed and energized to make a difference by funding the best science no matter where it is found in the world and providing critical programs and services to the patient families we serve.

Our work is guided by our core values:

We do the right thing for the patient families we serve
We are agile
We are relentlessly optimistic
We are owners of our mission
We are honest brokers for rapid development

About the Role

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.

Required Skills and Experience

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

Equity at UMDF

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

UMDF Benefits

100% company-paid health benefits for employee and their dependents

100% company-paid vision & dental benefits for employee and their dependents

Generous PTO including 10 vacation days, 3 personal days,10 sick days, and 11 paid holidays each year

Life Insurance provided at 2x annual salary to $200K with a $100K Guarantee Issue

Company-funded SEP IRA Account (6% of salary) and 403b Pre-Tax Savings Plan

Funding for professional development and continuing education

Additional Details

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.

Ready to apply?

United Mitochondrial Disease Foundation (UMDF)

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