Statement from the Board of Directors of SOFT (Support Organization for Trisomy 18, 13 & Related Disorders)

[Rochester, NY, July 1, 2025]

The Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) is proud to announce the appointment of Nick Holladay as its first Executive Director, effective July 1, 2025.

This appointment marks a major milestone in SOFT’s evolution from an all-volunteer network to a nationally coordinated, professionally led organization. The creation of the Executive Director role reflects a strategic shift designed to provide sustainable leadership, enhance program impact, and position SOFT for long-term growth.

Nick Holladay brings to the role more than a decade of experience in technology and nonprofit leadership. Over the past 14 months, he has served as SOFT’s Director of Technology, where he has steadily increased his leadership responsibilities. During this time, Nick has played an instrumental role in launching SOFT’s Support Pathways initiative, expanding its public visibility, and leading the publication of three books focused on the Trisomy journey. His collaborative leadership style, strategic thinking, and deep commitment to SOFT’s mission have consistently earned the trust and respect of families, board members, and partners alike.

“Nick’s work has already transformed how we serve families and tell our story,” said SOFT President Josh Bradley. “Bringing him on as Executive Director is not just a natural next step — it’s a strategic decision to ensure SOFT thrives in the years ahead.”

As Executive Director, Nick will lead the implementation of SOFT’s 5-Pillar Strategy, which includes strengthening family support systems, building medical partnerships, expanding public awareness, fostering community connections, and increasing access to high-quality information. He will also oversee SOFT’s transition from outsourced services to a dynamic internal staffing model and support the delivery of grant-funded initiatives — including the national Parent-to-Parent Support Network.

The hiring of an Executive Director was made possible by SOFT’s commitment to long-term sustainability and was aligned with recommendations from major funding partners. This role is essential to coordinating the growing range of programs, partnerships, and support services that have become central to SOFT’s mission.

“We are excited for this next chapter,” said Past President Barbara VanHerreweghe, “and we are confident that under Nick’s leadership, SOFT will continue to grow with integrity, responsiveness, and heart.”

For more information about SOFT and its programs, please visit www.trisomy.org.