EveryLife Foundation for Rare Diseases Welcomes Michael Pearlmutter as CEO

In a significant move to further its mission, the EveryLife Foundation for Rare Diseases has named Michael Pearlmutter as its Chief Executive Officer. The announcement, made on March 28 from Washington, D.C., marks a new chapter for the foundation, which has dedicated 15 years to serving the rare disease community through impactful advocacy and research initiatives. Pearlmutter’s appointment is set to catalyze the foundation’s ambitious vision for growth and innovation in the rare disease sector.

Michael Pearlmutter, a revered leader with over 13 years of experience at the helm of mission-driven organizations, transitions to the EveryLife Foundation from the Cerebral Palsy Alliance Research Foundation (CPARF). His tenure at CPARF was distinguished by significant advancements in research funding, fundraising efforts, and the establishment of pivotal programs like the Remarkable US disability technology accelerator and a strategic partnership with the Cerebral Palsy Research Network (CPRN). These achievements contributed to a 475% surge in grant applications and a 140% increase in fundraising, underscoring Pearlmutter’s capacity to drive transformative growth.

The EveryLife Foundation is poised to double its budget and extend its reach in the coming years, propelled by Pearlmutter’s strategic vision. This expansion aims not only to build upon the foundation’s established successes, such as the Community Congress and Rare Disease Week, but also to introduce new initiatives focused on advancing science policies, regulatory science strategies, and the application of AI and big data. These efforts are designed to expedite diagnosis and minimize the impact of rare diseases on patients and caregivers, affirming the foundation’s role in highlighting rare diseases as a crucial public health issue.

A United States Naval Academy alumnus, Pearlmutter brings a unique blend of passion, dedication, and personal experience with rare diseases to his new role. His firsthand understanding of the challenges faced by the rare disease community enriches his leadership, offering a profound empathy and commitment to the foundation’s objectives.

Vicki Seyfert-Margolis, Chair of the Board of Directors at the EveryLife Foundation, lauded Pearlmutter’s dynamic leadership and personal investment in the rare disease community as pivotal attributes for his role as CEO. His innovative approach and commitment to raising awareness about rare diseases as a public health crisis are seen as vital to the foundation’s growth and the broader development of new treatments.

Pearlmutter expressed his excitement about leading the foundation, emphasizing his personal connection to the rare disease community and his determination to leverage collective efforts to impact positive change. His vision for the foundation involves fostering innovation, strengthening partnerships, and accelerating progress to improve the lives of those affected by rare diseases.

About EveryLife Foundation for Rare Diseases:

The EveryLife Foundation for Rare Diseases is a leading nonprofit, nonpartisan organization dedicated to the development of treatments and diagnostic opportunities for rare disease patients. By advocating for science-driven public policy, the foundation aims to enhance the lives of millions of Americans living with rare diseases. Since its inception in 2009, the EveryLife Foundation has been at the forefront of advocating for policies that encourage innovation and eliminate barriers to accessing life-saving treatments. With its headquarters in Washington, DC, the foundation has established a national presence, tirelessly working to ensure a brighter future for the rare disease community.