WASHINGTON, March 28, 2024 /PRNewswire/ -- Building on the legacy of 15 years as a growing and impactful foundation serving the rare disease community, the EveryLife Foundation for Rare Diseases announces the appointment of Michael Pearlmutter into the new role of Chief Executive Officer of the foundation. Michael 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 (CPRN). During his tenure, CPARF saw a remarkable 475% increase in grant applications and 140% rise in fundraising, including securing three of the organization's largest donations.

Michael's appointment is an instrumental part of EveryLife Foundation's vision to expand the foundation's donor community and activities as it embarks on its next era. The Foundation seeks to double its budget and reach over the next 5-7 years, to support a bold new vision that not only builds on its highly successful Community Congress and Rare Disease Week but 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. Building on our groundbreaking studies in both areas, these programs will allow for the expansion of the EveryLife community to further illustrate the case for rare disease as a public health imperative.

A graduate of the United States Naval Academy, Michael brings a passion and dedication to service. Michael also has firsthand experience with a rare disease, furthering 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.

Vicki Seyfert-Margolis, Chair of the Board of Directors at the EveryLife Foundation for Rare Diseases, expressed excitement about Pearlmutter's appointment, stating, "Michael's dynamic leadership and personal connection to the rare disease community make him the ideal choice to lead our Foundation. His visionary approach and unwavering commitment are exactly what we need to grow the foundation and drive awareness that rare disease is a public health crisis that impacts everyone, and that innovations in rare disease almost lead the way in development of new treatments for diseases affecting many."

Upon his appointment, Pearlmutter shared his enthusiasm, "I am excited to be stepping into the role of CEO at the EveryLife Foundation for Rare Diseases. 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. 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."

Michael's extensive background in nonprofit management and fundraising, coupled with his innovative leadership, positions him perfectly to lead the Foundation in broadening its vision to advance treatments and cures for rare diseases.

About:
EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization dedicated to advancing the development of treatment and diagnostic opportunities for rare disease patients through science-driven public policy. The Foundation works to improve the lives of the millions of Americans suffering from rare diseases by advocating for policies that foster innovation and remove barriers to life-saving treatments.

Founded in 2009 and headquartered in Washington, DC, the EveryLife Foundation for Rare Diseases has programs throughout the United States. To learn more, visit EveryLifeFoundation.org.

For additional information visit everylifefoundation.org/news/. Follow us on Facebook, Twitter, Instagram, and LinkedIn.

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SOURCE EveryLife Foundation for Rare Diseases