The ALS Association is dedicated solely to the fight against Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. The Association pursues its mission through research, care services, and advocacy.
The ALS Focus Manager will have direct oversight of an ALS stakeholder driven platform – ALS Focus - to routinely survey people with ALS and their caregivers about their needs, preferences and experiences, and produce generalizable and open data for the entire ALS community. The incumbent is responsible for overall project management of survey design and implementation, tracking and executing against milestones and action items, and management and communications with the ALS Focus Steering Committee and Working Groups.
In addition, The ALS Focus Manager will cultivate the trust and confidence of national staff, chapters and other business partners, to establish effective relationships and communications. The ALS Focus Manager will be accountable for a current knowledge base of ALS patient focused drug development (PFDD) activities, including FDA policy and guidance.
The ALS Focus Manager reports to the Senior Director of Mission Strategy at The ALS Association, and will collaborate closely with colleagues in the research, development, finance, and other mission departments. The position will be based in the Washington DC office of The ALS Association and will involve travel to ALS Focus meetings as determined by business needs.
- Core duties and responsibilities include the following. Other duties may be assigned.
- Ensure that the ALS Focus program is transparent, accountable, and scientifically sound.
- In collaboration with other Association staff and with external advisors, plan and develop a strategy and organization to support objectives. Help establish goals and time lines, along with track and execute against ALS Focus milestones and action items.
- In collaboration with ALS Focus stakeholders and ALS Association staff, design and develop survey questions and final reports/publications for the entire ALS research community.
- Coordinate marketing and communications planning with ALS Association Communications team to execute an effective ALS Focus marketing campaign.
- Coordinate and oversee vendors and contracts.
- Develop presentations for scientific, clinical and policy audiences, as well as to lay audiences and potential donors about ALS Focus progress and impact.
- Ensure the Association is apprised of the latest impacts of the goals, objectives, and progress of ALS Focus.
- Develop and maintain relationships with and manage ALS Focus stakeholders, including the Steering Committee, Patient and Caregiver Advisory Committee, and Work Groups.
- Attend scientific and patient focused drug development meetings and meet collaborators, chapters, and potential donors as needed.
- Plan, implement and administer periodic ALS Focus meetings; and facilitate the formation of collaborations among stakeholders.
- Convey a professional and positive image that reflects favorably on The ALS Association.
- A master’s degree in a medical or health profession discipline, public health, statistics, health economics, or health related field.
- Three to five years of proven experience with experience in health survey design, implementation, and reporting.
- Experience in organizations that fund scientific or medical advancements or that that carry out scientific research or disease-focused market research.
- Familiarity with drug development and ALS or neurology.
- Excellent communicator, with a proven record of public speaking and writing to multiple stakeholders, including people suffering from serious illnesses, and government, academic and industry partners.
- Strong skills in statistics, data analysis, and data reporting.
- A proven track record of sound judgment and an analytical approach to decision-making.
- Proficient computer skills, especially with survey platforms, data analysis tools such as R, and Microsoft Office products.
- Ability to travel as required or requested on Association business.
The ALS Association is an Equal Opportunity Employer – M/F/Veteran/Disability/Sexual Orientation/Gender Identity