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Managing Director, Advocacy

The ALS Association
life insurance, paid time off, paid holidays, 401(k)
United States
Jul 28, 2025
Established in 1985, The ALS Association is the only national nonprofit organization fighting ALS on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.
POSITION SUMMARY:
Reporting to theVice President of State Policy, the Managing Director of Advocacy is charged with engaging lawmakers and regulators at the state level to make ALS a livable disease by 2030. The Managing Director of Advocacy works with and leads Association staff, volunteers, state officials, other advocacy organizations and the ALS community at large to accomplish these goals with urgency, integrity and compassion.

ESSENTIAL DUTIES AND RESPONSIBILITIES:
  • In collaboration with Vice President of State Policy and other internal and external Association stakeholders, develop and implement a comprehensive state policy and advocacy agenda that has a symbiotic relationship with organization's federal agenda.
  • Work directly with state legislatures and state executive branch agencies. This includes working with key healthcare policy makers, including members of legislative committees with jurisdiction over healthcare, as well as the Departments of Insurance and other state agencies and executive departments tasked with overseeing state health care programs.
  • Educate Managing Directors on all state policy efforts. This includes the development of grassroots action plans that strategically engage advocates and volunteers to achieve desired policy outcomes. Provide support as needed.
  • Partner with other mission areas (research and care services) and other Association teams, including development and communications, to develop and execute the Association's state advocacy goals.
  • Represent the Association at conferences such as the National Association of Insurance Commissioners (NAIC), the National Council of Insurance Legislators (NCOIL) and the National Conference of State Legislators (NCSL).
  • Assess outside counsel and lobbying needs within each state and manage these resources appropriately.
  • Cultivate the trust and confidence of staff, trustees, volunteers, elected officials and staff, and other members of the ALS community.
  • Promote effective and efficient communication of Advocacy information to the entire ALS community and the media in collaboration with Communications.

ACCOUNTABILITY MEASURES:
  • Develop effective strategies and priorities that help make ALS livable, and reflects the concerns of the Trustees, people with ALS and the broader ALS community.
  • Successfully manage state advocacy goals and activities to meet or exceed annual objectives.
  • Measure, assess, and improve the state advocacy outcomes achieved.

QUALIFICATIONS:
  • Bachelor's Degree (BA) from four-year college or university
  • 7-10 years of related experience and/or training in a similar role, or equivalent combination of education and experience.
  • Advocacy and state health policy experience required, with specific knowledge of ALS and health insurance issues preferred.
  • Proficiency in Microsoft Outlook, Word, Excel and PowerPoint and video conferencing platforms required.
  • Excellent online research skills.
  • Ability to handle confidential matters with a high level of integrity.
  • Ability to travel up to 30% and work weekends or evenings on Association business as required.

PAY TRANSPARENCY:
The ALS Association's pay range for this position is $108,150 - $120,697 annually.

The ALS Association has compensation ranges for various work locations throughout the United States, allowing us to compensate employees competitively and consistently in diverse geographic markets. The above-listed listed range shows prospective compensation for this role; the appropriate range will be established by what is eventually determined to be the candidate's primary work location. Various factors, including the complexity and significance of the role, job duties/requirements, relevant experience and abilities, and primary work location, determine individual compensation. Compensation ranges are evaluated and typically adjusted on a regular basis. Offers are made within the compensation range that is in effect at the time of the job offer.

The Association may, at its discretion, offer merit-based increases tied to individual performance. The benefits listed may differ depending on employment status with the Association. Healthcare benefits, a 401(k) plan with employer match, short-term and long-term disability coverage, basic life insurance, well-being benefits, paid time off and several paid holidays are available to Association employees, among other benefits.

We are an equal opportunity employer, and all qualified applicants will receive consideration for employment without regard to race, color, religion, sex, sexual orientation, gender identity or expression, pregnancy, age, national origin, disability status, genetic information, protected veteran status, or any other characteristic protected by law.

The ALS Association endeavors to make www.als.org accessible to any and all users. If you would like to contact us regarding the accessibility of our website or need assistance completing the application process, please email onlineaccommodations@alsa-national.org. This contact information is for accommodation requests only and cannot be used to inquire about the status of applications.

The ALS Association highly encourages their employees to be fully vaccinated, as considered per the CDC guidelines, with the COVID-19 vaccination. Requirements to have or obtain a COVID-19 vaccination may be applicable by state, local, and other federal orders or applicable lawful requirements by third-party clinics, vendors, or events attended on ALS Association business. If applicable, proof of vaccination will be required, unless approved for a legally required exemption by The ALS Association.

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