Chief Executive Officer

Are you looking for a job that makes a direct impact in the lives of families, and is positioned at the cutting edge of science? This is the perfect time to join our team. Researchers are driving key advancements for SADS conditions right now – including gene therapies – and there’s never been a more exciting time to be a part of our Foundation.

The Sudden Arrhythmia Death Syndromes (SADS) Foundation is leading the way to save lives through education, research and advocacy for families and individuals at risk for genetic heart conditions that can cause sudden death in young people. 

We promote increased medical research, develop and disseminate information and initiate programs to assist children, parents and families affected by SADS conditions. The values of passion and compassion are the underlying forces that motivate SADS families, researchers, medical professionals, board members and staff to fulfill our mission and goals.

Since its inception, the SADS Foundation has demonstrated its strong commitment to reducing sudden arrhythmia deaths by initiating programs to encourage continued research, raise awareness and provide ongoing support to affected families. We remain dedicated to informing individuals and communities about the warning signs of SADS conditions.

About the Position

Our new Chief Executive Officer will work with our passionate, remote team to expand the horizon of what we are capable of achieving at the SADS Foundation, and lead the way in saving lives. They will help move SADS forward and be recognized as the national/international voice for genetic heart conditions that can cause sudden cardiac death.  

To achieve this vision, we are looking for an innovative, passionate CEO who is committed to representing the patient voice at the highest level. Our new CEO should be versatile in communicating our mission and needs to multiple audiences - including donors, corporations, pharmaceutical companies, patients, government entities and healthcare professionals. 

We are looking for a CEO who understands that our community is at the heart of SADS, and who considers affected families in every decision they make. Our new leader should be quick to respond to an ever-changing research environment; ready to jump in front of a camera when a young person collapses on a football field in Iowa; or take a call from a family who’s just lost a loved one. Our CEO should make sure our budget is best spent to achieve our goals - and grows to help us expand our mission and meet our families’ evolving needs. By fostering alliances and partnerships they will expand our resources to enable SADS to better meet the needs of our community.

Primary responsibilities of the CEO include:

● Strategic planning: Developing and implementing the organization’s long-term strategy and vision in alignment with its mission.

● Community and public relations: Acting as the primary spokesperson for the organization, engaging with the community, and enhancing the organization’s public image and advocacy efforts.

● Program and Services—Oversees design, marketing, promotion, delivery and quality of programs and services

● Fundraising and development: Spearheading fundraising efforts, developing relationships with donors and sponsors, and identifying new revenue sources.

● Financial oversight: Managing the nonprofit’s budget, financial planning, and financial reporting to ensure sustainability and transparency.

● Board engagement: Working closely with the board of directors, providing them with the information they need to make informed decisions, and implementing their directives.

● Operational management: Overseeing the day-to-day operations, ensuring that the organization’s staff, resources, and processes are effectively managed.

Preferred Experience

1. Nonprofit disease advocacy experience or work in healthcare field

2. Prior organizational and/or project leadership experience leading and managing staff, including remote staff

Additional Info

Salary Range $100,000 - $120,000; commensurate with experience. Medical/dental benefits. 

How to apply: Interested candidates please submit a resume and cover letter indicating your interest, skills and experience, relative to the job description to marcia@sads.org.