Nonprofit Remote Digest - Issue #655
I AM ALS is a patient-centric movement revolutionizing how to end disease. The nonprofit provides critical support and resources to patients, caregivers and loved ones.
ALS is Relentless. So Are We — iamals.org I want to learn more about... learn about ALS discover current and potential therapies adapt to living with ALS manage finances and insurance develop my ALS caregiving toolkit planning ahead maintain your wellbeing take action
Chief Executive Officer
I AM ALS is a patient-centric movement revolutionizing how to end disease. The nonprofit provides critical support and resources to people with ALS, caregivers and loved ones. We empower advocates to raise awareness and lead the movement against ALS in driving the development of cures. Founded in 2019 by husband and wife team Brian Wallach and Sandra Abrevaya, I AM ALS was born out of their desire to rewrite the ALS story for Brian and the tens of thousands of other people with ALS.
The CEO of I AM ALS will lead a community revolutionizing a way to find treatments and cures for this fatal disease and helm the strategy of the next chapter of the organization’s future from start-up to sustaining movement. We are looking for a dynamic leader with the passion, energy and expertise to lead and grow the mission of our founders across patient advocacy, community support, communications and organizing, government policy, and transforming the ALS research system. This is a unique opportunity to drive a powerful organization to the next level.
Organizational Strategic Pillars and Priorities
Awareness and Organizing:
Ensuring that ALS is at the top of mind for those impacted by the disease as well as those not in the movement.
Driving an engaged community of thousands of advocates to change history for this disease in multiple ways.
Direct support for the ALS community:
Delivering community support services and creating innovative tools to help people affected by ALS at every step of the experience.
Transform ALS research:
Overseeing the development, launch and sustainability of I AM ALS’ patient-driven strategy to transform the ALS research ecosystem, leveraging expertise in biomedical science and public policy to dramatically improve ALS research progress and patient outcomes.
You are committed to finding treatments and cures for ALS. You believe deeply in the power of patient-led and patient-centric advocacy. You are a savvy organizational leader who embraces the energy of a startup and can build a vision for the organization as it transitions into a sustained, long-term movement. You are dedicated to understanding community and organizing as well as the institutional complexity of rare-disease research, advocacy and funding. You know diverse teams are the strongest teams and have a deep commitment to just strategies internally and externally. You are not afraid to roll up your sleeves to push boundaries never touched before. You will show up, on a consistent basis, to push for urgency in a space that has been stagnant for decades. You will keep those impacted by ALS at the center of the work and provide space for them to help drive organizational goals. You believe in great culture.
You possess a strong combination of the following abilities:
Carry forward and sustain a movement that empowers and mobilizes advocates within the ALS community, and that serves as a force multiplier into the neurodegenerative disease space through developing a data-driven strategy to solidify I AM ALS leadership and effectiveness.
Identify, steward and convert major donors, both individual and corporate, and build and expand a strong, sustainable development function.
Demonstrate strong leadership and confidence in decision making, balancing the needs and input of the board, co-founders, I AM ALS community, staff and broader ALS community.
Maintain a culture of urgency, innovation and excellence and lead the staff team to work effectively to maintain an ethos in which creative disruption is encouraged.
Serve as the chief representative of, and spokesperson for, I AM ALS by presenting to media and at scientific, patient-advocacy and policy meetings and conferences to show I AM ALS leadership in these spaces.
Support the key drivers of I AM ALS’ success: fundraising, community support, driving research progress and organizing by innovating.
Expand I AM ALS’ partnerships to multiply the impact of existing resources dedicated to ALS research.
This position is based in Washington, DC with travel up to 10% for meetings and events. The Board will entertain a flexible location for the right candidate.
Position is full time/exempt with competitive salary and benefits package including 100% premium-paid health insurance, flexible unlimited time off, 10 paid holidays (plus the week of July 4th and the week between Christmas and New Years), and health and transportation FSAs.
How to Apply
Interested candidates should apply by submitting a resume and cover letter expressing your interest and fit for the role to email@example.com with “I AM ALS CHIEF EXECUTIVE OFFICER” in the subject line. Applications will be reviewed, and upon qualification, we will contact you to determine next steps.