Executive Director – The LAM Foundation

Position Specification

The LAM Foundation

Executive Director

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: To apply, please submit a resume
and thoughtful cover letter highlighting
your commitment to the mission, skills, and experience as an
operations leader using this link:
https://loxo.co/job/MTM0OTMtN3Q2NjFmMzdtZ2M0NDd6YQ==?t=1710952688120