United Spinal Association mourns the recent loss of two leaders from our chapter network. Natalie Barnhard-Castrogiovanni, the founder of the Western New York Chapter of United Spinal and the Motion Project Foundation, passed away on January 9. Doug Frey, who served as president of the board of directors for SCIboston, passed away on December 28.
Reimagining Rehab in Western New York
Natalie Barnhard-Castrogiovanni was paralyzed at C5-6 in 2004 while working as a physical therapy assistant. Following her injury, she used her background in physical and massage therapy and her personal experience to build a vibrant community for people with spinal cord injuries and related disabilities.
She founded the Motion Project Foundation and the Western New York Chapter of United Spinal Association. She continued championing the value of physical therapy through the Foundation, culminating in the 2019 launch of the Natalie Barnhard Center for Spinal Cord Injury Rehabilitation and Recovery in Cheektowaga, New York. The center featured state-of-the-art equipment and hands-on rehab options that were previously unavailable in the area. “I want everyone to be able to receive the care and resources they need to live their life to the fullest,” said Barnhard-Castrogiovanni.
Barnhard-Castrogiovanni was also a tireless advocate for people living with SCI/D. She met with legislators at United Spinal’s Roll on Capitol Hill and shared her story publicly in numerous forums, including the popular TV show “Say Yes to the Dress.” United Spinal Association recognized Barnhard-Castrogiovanni’s efforts by naming her the 2021 Finn Bullers Advocate of the Year in 2021.
“Natalie’s life was marked by both profound hardship and extraordinary purpose. After acquiring a severe spinal cord injury, she chose a path that few could travel with such courage. Rather than turning inward or allowing suffering to diminish her spirit, Natalie allowed her journey to awaken something powerful within her. A passion to advocate, to lead, and to help others navigating life altering injuries,” reads a post by the Motion Project Foundation.
Paying it Forward
Doug Frey sustained an incomplete spinal cord injury in 2012, the result of an aggressive epidural abscess. While receiving treatment at Spaulding Rehabilitation in Boston, Frey got connected with a peer mentor from SCIboston. Thankful for the effect that mentor had on his own post-injury journey, Frey became a peer mentor himself. He later joined SCIboston’s board of directors and, in 2017, began serving as its president.
Under Frey’s leadership, SCIboston continued to grow, expanding its services and programs and extending its reach and ability to serve more people in Boston’s SCI community. While helping to lead SCIboston, Frey remained committed to the community, attending SCI support groups and continuing his role as a peer mentor, in addition to serving as a steady presence at fundraising and social events.
“SCIboston has lost a leader, a friend, and a strong supporter. Our hearts are heavy. We will honor his legacy by continuing the work he did to reach, inspire, support and empower individuals with spinal cord injury and their family,” the SCIboston staff and board of directors said in a statement.
A Commitment to Community
Both Frey and Barnhard-Castrogiovanni were committed and respected leaders in the United Spinal Chapter network. Matt Castelluccio, United Spinal’s interim CEO, first met Frey and Barnhard-Castrogiovanni on chapter leadership calls when he was serving as the leader for United Spinal’s Hudson Valley Chapter.
“As I was building my own chapter, I often looked to them for inspiration of what is possible with the right balance of leadership and passion,” Castelluccio says. “Both brought remarkable drive and vision to their work, always focused on ensuring their chapters truly met the needs of their communities. Their passion energized their boards, strengthened their communities, and inspired fellow leaders across our network.”
“The loss of both Natalie and Doug will be felt deeply by all who had the opportunity to know them and work alongside them and all who benefitted from the work they did. Their leadership has created strong foundations that will allow their teams to continue building the support structures they so thoughtfully envisioned.”