Case Study: Strategic Planning for a Rare Disease Nonprofit

People

Engaging the people closest to the work

Prosper’s Shared Power™ approach to strategic planning is grounded in a simple belief: the people most affected by an organization’s work should have meaningful opportunities to shape its future.

For UMDF, that meant looking far beyond the staff and board. The process engaged people living with mitochondrial disease and their families, clinicians and researchers, industry partners, patient advisory groups and single-disease organizations, alongside UMDF staff and board members.

A five-person staff strategic planning committee, including UMDF’s President and CEO, worked closely with a six-member board strategic planning committee. Broader stakeholder groups participated through surveys, interviews, listening sessions and opportunities to review the direction of the emerging plan.

In total, the final strategic plan was informed by more than 200 stakeholder voices. Prosper conducted 12 interviews with 15 stakeholders at UMDF’s Mitochondrial Medicine Conference; surveys generated 192 responses across patients and families, industry partners, partner organizations, staff and board; and two external listening sessions brought together another 41 participants, in addition to separate staff and board sessions.

Three lenses on UMDF’s reality

Prosper paired that stakeholder input with two additional assessments: an Organization Assessment focused on UMDF’s programs, operations, staffing, finances and capacity, and an Ecosystem Assessment examining peer organizations, collaboration opportunities and UMDF’s unique role in the field.

Together, the three assessments surfaced several important insights. UMDF needed to address financial sustainability urgently. Stakeholders saw major opportunities for greater impact in research and clinical trials, diagnosis and access to care, and awareness and education. They were generally open to UMDF exploring the broader mitochondrial dysfunction space as long as doing so remained clearly in service of its primary mitochondrial disease mission. And the ecosystem research suggested UMDF had an opportunity to formalize its role as a connector and convener across a fragmented field.

UMDF’s research process was extensive, incorporating detailed organization and ecosystem assessments alongside a stakeholder assessment informed by hundreds of survey responses and dozens of individual interviews.

Those findings gave staff and board a shared fact base for the decisions that followed.

Strategy

Turning research into strategic choices

With research complete, Prosper facilitated a strategic planning retreat with UMDF’s staff and board planning teams.

Rather than beginning with a predetermined set of priorities, participants brainstormed hundreds of strategic questions the organization would need to answer over the next three years. Those questions were grouped into 11 potential strategic pillars spanning financial sustainability, operations, organizational culture, measurement, advocacy, diagnosis and access, research, awareness, collaboration and mitochondrial dysfunction.

Prosper then led the group through an Eisenhower Matrix exercise to evaluate each potential priority based on expected impact and the lift required to pursue it. The exercise forced the planning team to make tradeoffs rather than treating every worthwhile idea as a strategic priority.

Ultimately, UMDF aligned around four areas of focus:

1. Funding: Strengthen UMDF’s financial foundation and grow revenue so the organization can fund expanded transformational research and increase its impact.
2. Diagnosis and Access: Expand programs and initiatives that improve diagnosis and access to quality care for people affected by mitochondrial disease.
3. Collaboration: Grow UMDF’s role as a respected lead convener of the mitochondrial disease community, with a clearer model for collaboration and collective impact.
4. Awareness: Strengthen UMDF’s brand while improving awareness and understanding of mitochondrial disease and mitochondrial dysfunction.

The four priorities reflected the strategic choices that emerged from the retreat and were assigned clear executive ownership before the team moved into implementation planning.

Refining the mission and vision with stakeholders

The planning retreat also produced new draft mission and vision statements. But rather than treating the retreat as the end of the process, Prosper brought the emerging strategy back to stakeholders through listening sessions.

That feedback materially changed the plan.

Stakeholders raised both wording questions and deeper philosophical concerns about the initial vision, “A world without mitochondrial disease.” In response, UMDF revised it to “A world free from the challenges of mitochondrial disease.” The organization also refined its mission language and clarified several of its strategic pillars.

The final mission became:

We collaborate to support and empower mitochondrial disease patients and families, drive awareness, mobilize advocacy, improve access to diagnosis and quality care, and accelerate breakthroughs in treatments and cures.

This step was particularly important: stakeholder engagement did not simply validate decisions that had already been made. It changed them.

Progress

Turning four pillars into measurable action

A strategic plan only matters if an organization can act on it.

Once UMDF’s strategic direction was clear, Prosper worked with the team to translate each pillar into Objectives and Key Results (OKRs), with measurable targets and clear ownership. The resulting plan moves far beyond statements of aspiration. It defines specific outcomes UMDF intends to pursue, from growing annual revenue to $10 million by FY2029, to building a patient and provider referral network, formalizing collaboration across the mitochondrial disease community and increasing awareness of mitochondrial disease.

Each pillar, objective and key result was entered into a live OKR dashboard with an accountable owner, start value, target value and timeframe. Prosper also helped UMDF establish quarterly activity planning and a regular check-in cadence so that strategy would become part of the organization’s ongoing work rather than a document revisited once a year.

The dashboard became the central hub for the strategic plan, designed to be regularly updated and used in meetings and decision-making.

UMDF is now using that system to manage its FY2027–FY2029 plan, with staff translating active key results into quarterly activities and revisiting performance as priorities, scientific developments and external conditions change. This reflects the core purpose of Prosper’s OKR approach: to create a direct connection between strategic priorities, measurable results and day-to-day work.