Manager, Public Policy Initiatives

The ALS Association National Office
Posted Date: 
Monday, January 22, 2018
Washington, D.C.

Bring your passion and leadership to join the fight against ALS! 

The ALS Association National Office is seeking an energetic, mission driven professional whose primary responsibility will be managing a well-established contract with the Centers for Disease Control for the ALS Registry. Additionally, the Manager, Public Policy Initiatives will be responsible for coordinating and contributing to all policy communications and be engaged in the development and implementation of assigned public policy initiatives. The successful candidate will experience the gratification of knowing that their work has significant impact on the lives of those dealing with this terrible disease. 

The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. As the preeminent ALS organization, the Association leads the way in research, care services, public education, and public policy – giving help and hope to those facing the disease. 

This is a full-time regular position that reports directly to the Vice President, Public Policy. 


Core duties and responsibilities include the following. Other duties may be assigned. 

The National ALS Registry 

  • Lead implementation and administration of a well-established project to promote the National ALS Registry funded through a contract with the Centers for Disease Control and Prevention (CDC). 
  • Plan and lead, with support from other staff, periodic small meetings to bring together representatives of ALS Chapters/Clinics on Registry matters. 
  • Work with Chapters/Clinics to support their efforts in enrolling people with ALS in the Registry including developing training documents based on CDC materials. 
  • Serve as the liaison to the CDC and several national organizations on promotion of the Registry. 
  • In collaboration with communications team, create promotional materials as needed. 
  • Provide staff support to a task force of ALS leaders responsible for guiding and supporting the Registry project. 
  • Manage the budget, with support from Finance, and provide regular reports to the CDC. 

Communication Management 

  • Point person for ensuring that Public Policy communications are updated and distributed. This work is done with significant support from both the Public Policy and Communications teams. 
  • Manage as well as contribute to advocacy communications including Public Policy updates on the website, electronic newsletters, social media, statements, news releases, testimony and the like. 

Policy Analysis 

  • Provide staff support for the collection of information on access to Radicava, a new drug introduced in 2017 for people with ALS. 
  • Contribute to the analysis of proposed legislative or regulatory actions and determine the potential impact on people living with ALS and The ALS Association’s public policy priorities. 

Public Policy Conferences and Events 

  • Support the planning and implementation of annual events such as the National ALS Advocacy Conference and the Chapter Fly-In. Provide similar support for other meetings and events as well. 


  • Bachelor’s degree and three to five years related experience preferably within the patient advocacy community, government or the equivalent combination of education and work experience. 
  • Experience in project management is desirable. 
  • Excellent written and oral communication skills. Self-starter as well as team player. 
  • Strong organizational skills needed including ability to handle diverse assignments. 
  • Ability to work well with all levels of management and volunteers, health professionals, patients and families as well as government officials and staff. 
  • Excellent interpersonal skills and proficient computer and internet research skills are a must. 
  • Ability to travel on Association business as required or requested. Limited travel is anticipated. 

Qualified and interested candidates please submit your cover letter, resume and salary history to: 

The ALS Association endeavors to make accessible to all users. If you would like to contact us regarding the accessibility of our website or need assistance completing the application process, please call 202.464.8831 or email . This contact information is for accommodation requests only and cannot be used to inquire about the status of applications. 

The ALS Association is an equal opportunity employer. Qualified applicants will receive consideration for employment without regard to race, color, religion, sex, sexual orientation, gender identity, national origin, disability or protected veteran status. For our EEO Policy Statement, please click here.