The Charcot-Marie-Tooth Association named Wendy Arnone as chair of its Board of Directors and appointed two new board members, David Stark, MD, and Catherine Illingworth. The changes reflect the organization’s continued growth and commitment to bringing together leadership with both professional expertise and personal connection to CMT.
A new board chair builds on a decade of progress
Arnone succeeds Gilles Bouchard, who has served as board chair since 2016 and will continue as a board member. She brings extensive executive leadership experience across the healthcare and health insurance sectors, informed by her clinical background as a registered nurse. Throughout her career, she has held senior roles at UnitedHealthcare, Excellus BlueCross BlueShield, and HealthNow New York Inc., most recently serving as West Region CEO for UnitedHealthcare, overseeing operations across 13 states serving more than three million members. She joined the CMTA Board in 2024.
“Wendy brings a high level of business experience and acumen, along with a deep commitment to advancing treatments for CMT,” said Sue Bruhn, PhD, CMTA CEO. “I’m excited to work with her as board chair and grateful to Gilles for his continued service to CMTA.”
Bouchard’s decade of leadership coincided with significant growth in CMTA’s research program. “During that time, CMT research evolved into a rich and productive ecosystem attracting world-class players,” he said. “It gives me confidence that our vision of a world without CMT is within reach.”
Arnone acknowledged that foundation as she steps into the role. “Gilles’s leadership has helped shape a clear strategy and sense of purpose for the organization,” she said. “I look forward to continuing this work and advancing CMTA’s mission for the CMT community.”
When the mission is personal
Stark is Chief Medical Officer at Citadel, where he leads the firm’s global health and benefits strategy. A board-certified pediatric neurologist and founder of Lab 100, a clinic providing full-body health screenings, Stark’s connection to CMT is both professional and personal. His son was diagnosed with CMT1B at age four, giving him firsthand experience with the challenges families face in securing an accurate diagnosis and navigating care.
Illingworth leads Kylix Bio, a biotechnology company focused on advancing gene-based therapies for rare diseases, beginning with CMT. Her path to the field was similarly shaped by her family. In early 2025, her four-year-old son was diagnosed with CMT4C. Confronted with limited treatment options, she founded Kylix with the goal of moving CMT research from preclinical studies into clinical trials as quickly as possible.
Both Stark and Illingworth bring a first-hand understanding of what it means to receive a CMT diagnosis and to navigate a disease for which no cure currently exists.
“David and Catherine each bring perspectives that will be invaluable to CMTA’s work,” said Board Chair Arnone. “Their professional expertise, combined with their personal connections to CMT, adds depth to the board as we continue advancing CMTA’s mission for the CMT community.”
