Director, Cures Collective

I Am Als; United States; Teletrabalho; USD 80 000 - 115 000; Tempo integral

Vantagens oferecidas por esta oferta de emprego

Health insurance (employer-paid)

Dental insurance (employer-paid)

Vision insurance (employer-paid)

401K with employer match

Unlimited PTO

Resumo da oferta

I AM ALS is seeking a Director for the Cures Collective to build and lead a fast-growing coalition spanning ALS, Parkinson's, Alzheimer's, MS, FTD, Huntington’s, and more. You will direct policy campaigns, manage working groups, and engage over 60 organizations, driving urgent health policy and system-change initiatives.

Location is remote across the US with standard 40-hour weeks; travel may be required for major events. Salary ranges from $80,000 to $115,000, with comprehensive benefits.

Qualificações

• 4+ years of professional work experience in project management, coalition or program coordination.
• Experience leading or managing multi-stakeholder coalitions or member-based organizations.
• Exceptional written and verbal communication skills.
• Familiarity with project management and collaboration tools (Asana, Google Workspace, Slack, Zoom).

Responsabilidades

• Coordinate policy campaigns and drive the Collective's federal priority work, including PDUFA-related efforts.
• Shape and manage working groups, recruit co-leads, schedule meetings, and track action items.
• Draft and manage regular communications, newsletters, and website content.
• Onboard new members, maintain engagement records, and serve as a point of contact.
• Plan virtual and in-person meetings, handle logistics and follow-up.

Conhecimentos

Project management

Coalition leadership

Communication skills

Remote collaboration tools

Strategic thinking

Stakeholder coordination

Formação académica

Bachelor’s degree or equivalent

Ferramentas

Asana

Google Workspace

Slack

Zoom

Descrição da oferta de emprego

Neurodegenerative diseases (NDs) - including ALS, Parkinson's, Alzheimer's, Huntington’s, MS, and FTD - share deep biological roots and many of the same obstacles: common regulatory hurdles, persistent research and funding silos, and a striking lack of public awareness. Yet they have been fought separately, community by community, with little coordination across research agendas, policy priorities, or funding strategies. The result: no cures, diminishing returns on fragmented advocacy, and a field that has not moved at the pace the science, or the patients, demand.

The Cures Collective was built on one conviction: cross-disease collaboration will lead to faster breakthroughs. With over 60 members - patient advocates, researchers, clinicians, funders, and industry partners - the Collective unites stakeholders across neurodegeneration in a single, urgent goal: cures for all. Together, we build public awareness, accelerate scientific progress through intentional infrastructure, and drive the policy change needed to find cures and make them accessible.

The Cures Collective was incubated and launched in 2024 within I AM ALS, a patient-centric movement founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, who set out to rewrite the ALS story for Brian and the tens of thousands of others living with the disease. In building I AM ALS, they pioneered a patient-centered model of change: one where people with ALS, caregivers, and loved ones aren't just supported, but empowered as advocates who raise awareness and lead the movement to drive cures forward. The Cures Collective grew directly out of that model - a recognition that the same patient-led, movement-building approach that has advanced the fight against ALS could unite and accelerate progress across neurodegenerative disease as a whole.

Responsibilities

The Cures Collective Director will help build the foundation of a fast-growing coalition. Over 60 organizations across ALS, Parkinson's, Alzheimer's, MS, FTD, Huntington’s and more have already committed to working together. This is a role for someone who both sets direction and does the work. This role will be responsible for:

• Policy Coordination: Coordinate and drive the Collective's policy campaigns, keeping member organizations aligned and moving on shared federal priorities. The near-term focus is the Collective’s contribution to the Prescription Drug User Fee Act (PDUFA) reauthorization effort. You will run the timeline, convene the participating organizations, track commitments and comment deadlines, assemble materials, and keep the effort moving. Policy strategy and substantive expertise sit with I AM ALS policy staff and member organizations, with whom you will work in close partnership.
• Working Group Management: Shape and manage efforts across Collective's working groups including recruiting and supporting co-leads, scheduling, preparing agendas and pre-reads, coordinating with co-leads, notes, and follow-through on action items. Hold members accountable to commitments and surface cross-group connections that leadership should act on.
• Communications: Draft and manage the Collective's regular communications, including member updates for newsletters, meeting materials, one-pagers, and website content. Maintain listservs and distribution lists, and make sure members hear from us on a predictable basis.
• Member Engagement and Administration: Identify which organizations the coalition needs next and bring them in - recruit and onboard new members, maintain the member database and engagement records, respond to inbound questions, and serve as a reliable first point of contact for the coalition. Track participation and produce simple reporting on coalition activity.
• Meeting and Event Support: Plan and execute virtual convenings and periodic in-person meetings - logistics, registration, materials, run-of-show, and follow-up.

To be successful in this role, you’ll need to have a combination of the following experience and qualifications:

• 4+ years of professional work experience in project management, coalition or program coordination, chief-of-staff support, or a related field
• Experience leading or managing multi-stakeholder coalitions, consortia or member-based organizations
• Demonstrated ability to run multiple concurrent workstreams
• Exceptional written and verbal communication skills
• Comfort with project management and collaboration tools (Asana, Google Workspace, Slack, Zoom, or equivalents)
• Demonstrated strength in the following areas:
• Willingness to go above and beyond to be a team player in a fast-paced, startup environment
• Ability to work independently and productively in a virtual work environment
• Problem solver, able to find creative solutions when challenges arise
• Willingness to give and receive feedback, open to individual growth
• Experience with the federal health landscape, with FDA regulatory processes preferred
• Type: Full-time employee (40 hours per week). M-F working hours, with rare evening or weekend hours for major events or activities. Travel will be occasionally required.
• Location: Remote. Anywhere within the US, available eastern hours to correspond to the organization’s schedule.
• Salary: $80,000 - $115,000, dependent on experience.
• Benefits: Excellent benefits package including employer-paid health, dental, and vision plans; 401K with employer match; and unlimited PTO policy.

Who You Are

A Builder and Connector who understands that systems work is what turns a coalition of 60 organizations into a force. You are a strategic and organized thinker, and are able to keep a complicated set of moving parts organized without needing to be asked.

You are driven to build relationships and community. You will be the central link among volunteers and stakeholders, including researchers, foundation leaders, industry partners, and patient advocates. You earn their trust by being reliable, prepared, and genuinely helpful.

Neurodegeneration research, FDA regulatory pathways, the mechanics of federal health policy - you do not need to arrive knowing all of it, but you want to know it.

You are equally comfortable in a strategy conversation and in a spreadsheet. Much of what you build here will be the first version of itself - you find that energizing, and you don’t consider any part of the work beneath you.

At the core, you care about the outcome - people waiting on breakthroughs across these diseases do not have time for another slow-moving coalition. You are committed to working on an urgent timeline.

I AM ALS’s mission is to accelerate a cure for ALS by mobilizing collective power to drive urgent policy and systems change. Our employment decisions are based on I AM ALS’ goals, organizational needs and individual qualifications, without regard to a person’s race, religion, sex, gender identity or expression, sexual orientation, national origin, age, disability, genetic information, veteran status, or any other status protected by law. We are building a bold, inclusive, and mission-driven team because solving ALS demands it, and we would welcome applications from candidates of all backgrounds.