Chief Development Officer, Les Turner ALS Foundation

VISION
A world free of ALS.

MISSION
To provide the most comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease, and advance scientific research for the prevention, treatment and cure of ALS.

BACKGROUND
Based in Chicago, the Les Turner ALS Foundation ("the Foundation"), is a recognized leader in ALS research, patient care, and education. Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that weakens the muscles used to move, swallow, and breathe. It can, in some cases, also cause changes in behavior and thinking. The effects of ALS grow more severe over time and eventually become fatal. The average survival for someone affected by ALS is 2 to 5 years. There is no cure yet. While technically considered a "rare disease," experts predict an individual's lifetime risk of acquiring ALS is about 1 in 300, by the age of 85. Approximately 32,000 people live with ALS in the US.

The Foundation provides individualized care, local community support, and advances early-stage scientific discovery. It is recognized as one of the nation's oldest, independent ALS organizations and is a leader in building visibility for the disease locally, regionally, and nationally. The Foundation's Support Services team serves approximately 300 families and 600 caregivers annually in Illinois, Michigan, and Wisconsin while its broader education and outreach efforts now reach more than 22,000 individuals annually. Support services provide individualized approach to ensure each person living with the disease and their loved ones receive the best quality of care and access to the most promising therapies, while its educational resources are available to all living with ALS.

The Lois Insolia ALS Clinic at Northwestern Medicine is recognized as one of the nation's best multidisciplinary centers for ALS patients. The Clinic offers patients access to enrollment in clinical trials as well as access to the Foundation's coordinated support services. The Les Turner ALS Center operates as an early-stage investor in ALS science and was launched with the transformational philanthropic support of the Les Turner ALS Foundation. The Center strategically funds research at the point where ideas are most innovative, and traditional funding is hardest to secure. The strong union with the Les Turner ALS Foundation has helped Northwestern scientists and clinicians to establish themselves as leaders and innovators in ALS research that moves discovery toward clinical impact.

Since inception, the Foundation has raised more than $100 million - directly and indirectly - to advance the fight against ALS. Through collaborative research and symposiums, the Foundation reaches the ALS community worldwide and is one of the founding members of the International Alliance of ALS/MND Associations, which provides support to patient-driven associations through networking and educational resources about ALS. Members of the Foundation staff as well as members of the Les Turner ALS Center regularly present at the International Symposium on ALS/MND, sharing their knowledge and experience with other ALS professionals from around the world.

As an independent 501(c)3, the Foundation is not affiliated with any of the more than 70 ALS organizations nationwide but seeks opportunities and works collaboratively with many of them. It is governed by a dedicated Board of Directors made up of leaders from the business and civic worlds in Chicagoland including a physician who provides critical services to people living with ALS. All members of the Board of Directors have been personally touched by ALS.


OPPORTUNITY
Focused on research, support services, and education, the Foundation operates at the intersection of urgent need and meaningful opportunity. Approaching its 50th anniversary in 2027, it has grown from serving 300 individuals in 2020 to more than 22,000 in 2025-building strong momentum for its next phase. This creates a clear opportunity for a transformational fundraising leader to scale annual revenue from $3M to $5M and beyond.

In partnership with Northwestern University, the Foundation successfully completed a $10M endowment for the Les Turner ALS Center and is committed to raising an additional $10M over the next decade. The Center is one of the nation's leading ALS research hubs, uniquely integrating discovery, clinical care, and trials. Through its grantmaking, the Foundation fuels innovative, early-stage research that positions investigators to secure major national funding-making this a highly compelling case for philanthropic investment. This model - funding innovation at its earliest and most catalytic stage - creates a highly compelling and differentiated case for philanthropic investment.

With a $4.7M operating budget, the Foundation delivers outsized impact - providing critical, direct support to individuals and families while advancing research, education, and advocacy nationwide. Its mission is urgent, its outcomes tangible, and its growth trajectory strong.

The fundraising program is well-positioned for expansion. Signature events, including the Walk for Life and Hope Through Caring Gala, generate approximately $800,000 annually, with significant opportunity for growth while also serving as key entry points for donor acquisition and pipeline development. A strong base of loyal supporters provides a foundation for growth in major gifts, planned giving, and institutional philanthropy. The opportunity ahead is to elevate and diversify revenue streams while clearly differentiating the Foundation within a competitive ALS landscape.

Under the leadership of CEO Laura Freveletti, the organization has strengthened its infrastructure and invested in systems to support growth, including a new CRM and case management platform. Event execution has been outsourced, enabling the development team to focus on strategy, relationship building, and revenue generation.

The Foundation's strategic priorities - advancing research, enhancing quality of life, and strengthening leadership within the ALS community - provide a clear and compelling roadmap for growth.

The Chief Development Officer will lead a talented team and serve as a key member of the leadership team. This is a rare opportunity for a high-performing fundraising leader to build on strong momentum, shape foundation-wide strategy, and drive transformational growth in support of a mission with national significance.

POSITION DESCRIPTION
Reporting to the Chief Executive Officer (CEO), the Chief Development Officer (CDO) is the strategic leader and driver of the Foundation's next phase of philanthropic growth. This role offers the opportunity to leverage strong momentum and lead a modern, integrated fundraising program that expands revenue, deepens donor engagement, and elevates the organization's national profile.

As a lean, high-impact organization, the Foundation requires a CDO who operates seamlessly at both strategic and execution levels. The CDO will set vision and direction while also leading day-to-day fundraising activity-personally managing key relationships, advancing solicitations, and ensuring consistent execution across all development functions.

The CDO will design and execute a multi-year development strategy spanning major gifts, annual giving, institutional funding, and events, building a disciplined, metrics-driven fundraising culture. In close partnership with the CEO and Board, the CDO will strengthen and expand the major gifts program, with a focus on securing transformational support. Experience in academic medicine, research, or similarly complex nonprofit environments is strongly preferred.

As a member of the leadership team, the CDO will align fundraising with organizational priorities and collaborate across functions and with partners at Northwestern University. The role includes oversight of a lean development team and external partners, with responsibility for deploying resources effectively and maximizing impact.

This is a highly visible, hands-on leadership role with significant opportunity to shape the Foundation's future growth and impact. The CDO will maintain a personal portfolio of high-capacity donors, lead complex solicitations, drive moves management with rigor, and guide board engagement in fundraising. They will also oversee development operations, ensuring strong systems, compliance, and performance accountability.

The ideal candidate will be energized by the opportunity to translate urgency into action - mobilizing resources, relationships, and strategy to accelerate progress toward a world free of ALS. CANDIDATE PROFILE
The Foundation seeks a sophisticated, high-performing fundraising leader who thrives in an entrepreneurial, growth-oriented environment, and embraces a "player-coach" leadership style. The ideal candidate brings a track record of driving revenue growth and closing significant gifts, along with the judgment and adaptability to lead strategy while remaining deeply engaged in execution.

This individual is both strategist and an operator-equally comfortable setting direction, building plans, and rolling up their sleeves to move work forward. They will bring deep experience in major gifts and moves management, with demonstrated success in building pipelines, advancing relationships, and securing five-, six-, and ideally seven-figure commitments.

The successful candidate will be highly disciplined and data-driven, using metrics to guide decision-making, track progress, and refine strategy. Strong financial and operational acumen is essential, including experience aligning fundraising plans with organizational goals and managing budgets and forecasts.

A collaborative, credible, and emotionally intelligent leader, the CDO will engage effectively with the CEO, Board, and institutional partners, while building and motivating a small, high-performing team. They will be proactive, resourceful, and comfortable operating with both autonomy and accountability.

A minimum of 10 years of fundraising experience or equivalent relevant experience is required. BA/BS degree or equivalent is required. Evidence of continuing professional education is ideal. Computer proficiency is required.

Salary & Benefits
$150,000-$180,000 plus comprehensive benefits including 401(k) with match, professional development, healthcare allowance, hybrid work schedule and paid time off.


The Les Turner ALS Foundation is an equal opportunity employer and considers applicants for all positions without regard to race, color, religion, creed, gender, national origin, age, disability, marital or veteran status, sexual orientation, or any other legally protected status.