Executive Director

The LAM Foundation

POSITION

Executive Director

ORGANIZATION

The LAM Foundation

thelamfoundation.org

LOCATION

Remote – some travel required

ABOUT THE LAM FOUNDATION

The LAM Foundation is a pioneering organization dedicated to advancing the fight against lymphangioleiomyomatosis (LAM), a rare and progressive lung disease primarily affecting women. Founded in 1995 as a grassroots initiative, the foundation has emerged as a global leader in advocating for safe and effective treatments, and ultimately a cure, for LAM. The mission encompasses advocacy, funding promising research, and providing invaluable support to the scientific, medical, and patient communities. With a focus on serving women with LAM and their families, the foundation offers comprehensive resources, information, and a worldwide network of hope and support. Looking ahead, the strategic objectives over the next five years include targeted scientific research, biomarker development, drug discovery, clinical trial completion, enhanced patient care, global outreach, and diversification of the revenue streams along with increased fundraising efforts to fulfill our commitment to promising research and ultimately, finding a cure for LAM.

REPORTING TO: The Executive Director reports to the Board of Directors with annual reviews led by the Governance Committee.

THE OPPORTUNITY

The LAM Foundation is seeking an exceptional Executive Director (ED) to serve as the leader responsible for advancing strategic objectives and championing the voice of LAM patients and families. In partnership with the Board of Directors, the ED will oversee all facets of operations, finances, and program development, while expanding the donor base, investigating new revenue sources, and elevating impact. This role presents a unique opportunity to shape the future of LAM, and lead with empathy, inclusivity, and unwavering dedication to the cause.

The ED is responsible to:

  • Recruit and retain a diverse, highly qualified staff and volunteers by providing professional and personal growth within a structure that fosters a safe, accountable, and team-oriented environment.
  • Lead execution of foundation programs and patient services.
  • Provide leadership to and manage the best efforts of staff and contracted services.
  • Ensure that fund development relationships and activities are robust and meet or exceed strategic and budgetary goals.
  • Prepare accurate and timely analyses that capture and communicate program outcomes, variances, and performance trends.
  • Maintain and nurture positive relationships with stakeholders and stakeholder groups.
  • Develop procedures to implement Board policies, ensure compliance with legal and regulatory requirements, and comply with federal, state and local laws and ordinances.
  • Develop and foster a collaborative and supportive communication channel with the members of the board.

In addition, the ED will work collegially with officers appointed by the Board and other stakeholders. The ED collaborates with and develops a working relationship with the Scientific Director (SD) and Chief Mission Officer (CMO) appointed and evaluated by the Board, according to the following principles:

  1. Consistent and timely communications between the SD, CMO, and ED related to joint strategies is essential. The ED will work collaboratively with the SD and CMO to define and recommend annual outcomes to the Board and to agree upon the annual tactics to deliver those outcomes. The ED will provide input in forming the direction based on a unique understanding of a broad spectrum of patient issues/priorities, donor wishes/priorities, and scientific and clinically related insights gleaned from interactions with these stakeholder communities.
  2. The ED, SD, and CMO are accountable to the Board of Directors and will meet periodically with the Chair.

Subject to the principles of shared leadership with the SD and CMO, the ED will manage all operations and activities, including providing direction to the staff and ensuring proper fiscal and operational management.

Strategic Planning and Execution

  • Work with the Board in its strategic planning process.
  • With Board review and approval, develop an annual plan with measurable outcomes consistent with the strategic plan.
  • In partnership with the SD and CMO, provide feedback and support for fulfilling the mission of the Foundation, utilizing input from multiple sources, including all staff members and stakeholder groups.
  • Direct priorities for program activities in a manner consistent with the strategic plan, annual plan, and intent of the Board.
  • In partnership with the CMO, identify new opportunities to leverage resources in an effort to maximize impact.
  • Participate in meetings, conferences, and review literature to maintain current knowledge of the thinking, issues, and people influencing issues important to Foundation’s mission.
  • Assess accomplishments, shortfalls and identify potential threats, and report on those to the Board to inform future thinking and actions.

Internal Operations and Team Management

  • Set the operational procedures for the Foundation and oversee their proper execution.
  • Assemble and manage the Foundation’s staff; ensure that the Foundation attracts and retains the talent necessary to successfully carry out its programs and mission; hire, evaluate, discipline according to a progressive disciplinary process, and fire staff members as necessary.
  • Establish compensation policy for staff and levels consistent with review of overall compensation budget and philosophy by the Board including oversight of contracted services.
  • Exercise fiscal stewardship by overseeing the Foundation’s investments, budgets, and financial reporting. Regularly report financial performance to the Board and its Finance Committee, providing insights and recommendations to support informed decision-making.
  • Propose annual budgets for the Foundation’s operations and programmatic activities.
  • Oversee and approve monthly financial transactions.

Fundraising and Development

  • Directly oversee the implementation of the current fundraising plan with a goal of raising $2MM, supervising the efforts of the staff director responsible for fundraising campaigns.
  • Facilitate and empower board members to actively engage in fund development campaigns. Provide resources, guidance, and support to maximize their involvement and leverage their networks for fundraising success.
  • Build and nurture relationships with high-value donors, focusing on individuals, corporations, and foundations capable of making sustained contributions of $5,000 to $10,000 and above. Develop personalized cultivation strategies to engage donors in the mission and work of the organization, fostering long-term partnerships and investment.
  • Take ownership of the bi-annual LAMposium event, reimagining its format and structure to optimize profitability for the foundation. Develop comprehensive sponsorship packages to attract corporate donors and secure financial support.
  • Demonstrate fluency in navigating diverse funding avenues beyond traditional fundraising. Take the lead in pursuing federal and private grant opportunities, leveraging expertise in the grant application process to secure additional resources.

Program Development and Management

  • Ensure that current programs are consistent with the strategic plan.
  • Ensure that programs and patient-centered services meet the expectations of the Board and other stakeholders and are evaluated on a routine basis to make data-driven recommendations for improvement, expansion or suspension of programs and services.
  • In partnership with TLF staff, develop and maintain relationships with patients, caregivers, and advocacy groups to better understand their needs and perspectives.
  • Provide oversight and guidance on the development of new programs and program areas, ensure new program ideas have business plans that include staffing needs, revenues and expenses along with a timeline for implementation.
  • Ensure that new and established collaborations, joint initiatives, conferences, and Foundation-supported databases, inclusive of patient registries, bio repositories, and clinic networks, have business plans and written agreements inclusive of staffing needs, revenues and expenses and provisions for intellectual property and royalties
  • Convene and lead staff discussions regarding strategic, operational, and tactical issues.

External Relations & Communications

  • In partnership with the SD and CMO, advance the mission and image of the Foundation by serving as a representative of the organization to stakeholders, including the Board, staff, donors and/or members, the media, the government, and the general public.
  • Advocate for public policy interests at the national level as well as to various business sectors, the media, and appropriate partner organizations and collaborative entities.
  • Develop and support the Foundation’s communication strategy for external positioning.
  • Design and when appropriate, develop (or review) reports, publications, presentations, articles, and other communications (including web-based and other new media) to disseminate and promote the Foundation’s activities.

Board Support

  • Report regularly to the Board on the activities of the Foundation and progress toward meeting strategic objectives.
  • Ensure that Board members are kept informed of matters and developments that warrant their attention and are kept up-to-date on best practices on organizational management and leadership.
  • Work with the Chair to structure and guide Board meetings allowing opportunity for discussion and input.
  • Serve as an ex-officio non-voting member of Board committees, as appropriate.

Other

  • Travel as required with reimbursement of reasonable expenses.
  • Perform other duties as required.

QUALIFICATIONS AND EXPERIENCE

The ED will have demonstrated success in the management of foundations or comparable organizations and possess sufficient expertise on relevant issues to make well-informed mission-related decisions and command the confidence and respect of stakeholders necessary to serve as the leader of the Foundation.

  • At least 5-10 years of senior-level leadership experience, preferably in managing foundations or comparable organizations, demonstrating a track record of success in strategic planning, budgets, team management, and organizational growth. Proven track record of collaborating closely with executive teams, executing strategic visions while providing valuable input and fostering effective governance.
  • Strong ability to build and sustain relationships with diverse stakeholders, including staff, board members, external partners, donors, and community members, utilizing excellent interpersonal, communication, and networking skills.
  • Demonstrated success in fund development, including implementing fundraising strategies, cultivating donor relationships, and diversifying revenue streams.
  • Bachelor’s degree required; advanced degree is a plus.

COMPENSATION AND BENEFITS

Commensurate with experience. The salary range for this position will be $165,000- $175,000 annually. In addition, The LAM Foundation offers a benefits package including comprehensive medical, dental, & vision insurance, generous PTO, retirement, cell phone stipend, and much more.

APPLY: NO LONGER ACCEPTING APPLICATIONS FOR THIS POSITION