RARE Daily

EveryLife Foundation for Rare Diseases Names New CEO

March 28, 2024

Rare Daily Staff

The nonprofit EveryLife Foundation for Rare Diseases has appointed Michael Pearlmutter into the new role of chief executive officer of the foundation.

Pearlmutter is a distinguished executive with more than 13 years of leadership experience in mission-driven organizations, most recently as the executive director of the Cerebral Palsy Alliance Research Foundation (CPARF). While there, he was instrumental in significantly expanding research initiatives, boosting fundraising efforts, and initiating both the Remarkable US disability technology accelerator program and the strategic partnership with the Cerebral Palsy Research Network. During his tenure, CPARF saw a remarkable 475 percent increase in grant applications and 140 percent rise in fundraising, including securing three of the organization’s largest donations.

EveryLife Foundation’s vision is to expand the foundation’s donor community and activities, seeking to double its budget and reach over the next 5 to 7 years, to support a new vision that not only builds on its highly successful Community Congress and Rare Disease Week but also expands its ability to change rare disease outcomes. New initiatives will address science policies, including novel therapy platforms, such as gene and cell therapies; regulatory science strategies to address new clinical trial approaches; and the use of AI and big data to design and develop methods to shorten the diagnostic odyssey and reduce disease impact on patients and caregivers living with rare disease. These programs will allow for the expansion of the EveryLife community to further illustrate the case for rare disease as a public health imperative.

Pearlmutter has firsthand experience with a rare disease, which underlies his dedication and personal connection to the mission of the EveryLife Foundation. His own experiences bring a deep understanding and empathy for challenges faced by rare disease patients, including the often-prolonged diagnostic odyssey that many endure.

“As someone who has personally navigated the challenges of a rare blood disorder, I am deeply motivated to harness our collective power to make a significant impact,” said Pearlmutter. “Every day, I am grateful that my diagnosis comes with a treatment and a positive prognosis, but I know that the journey of every individual who has a rare disease is unique. Together, we’ll foster innovation, strengthen partnerships, and accelerate progress to transform the lives of the rare disease community. I am filled with energy, optimism, and determination as we embark on this journey together.”

Photo: Michael Pearlmutter, CEO of EveryLife Foundation for Rare Diseases

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