The Team

Sander Aerts is the father of Senna and graduated as an engineer from KU Leuven. He lives with his family in the Barcelona region of Spain and has a strong technical background with a deep affinity for AI, digitalization, and systems thinking. As a board member at large within the ATAD3A Alliance, he focuses on the technical and innovative aspects of the platform. He is committed to driving innovation and uniting global research and data to foster collaboration and generate new insights.

Marisa lives in Pittsburgh, Pennsylvania, with her husband and daughter, Gemma, whose diagnosis with Harel-Yoon syndrome left her desperate to find community. After learning that Drs. Harel and Yoon had received a grant to advance their groundbreaking research, she was motivated to support their efforts and the families affected by ATAD3A-related disorders. With more than 18 years of experience as a professor and a strong background in marketing, fundraising, and nonprofit leadership, Marisa brings a deep commitment to education, advocacy, and community-building to her role as Vice President of the ATAD3A Alliance. She has served on several nonprofit boards and has professional experience spanning animal advocacy, fundraising, and entrepreneurship. In her role with the Alliance, Marisa aims to raise awareness, support newly diagnosed families, and honor the lives of those who are no longer with us. She believes that every effort—no matter how small—contributes to a stronger future for all ATAD3A families.

Tom serves as Secretary for the ATAD3A Patient Advocacy Alliance. Tom is an optical engineer whose professional focus is on the development of spaceborne remote sensing instruments for weather, climate, and earth science research. When his granddaughter was diagnosed with an ATAD3A mutation, he discovered how difficult it was to find information on the condition, its causes, and options for patient support, thus motivating him to help those with this condition. Originally from California, Tom now lives in Colorado where he enjoys spending time with grandchildren, playing tennis, and enjoying outdoor sports.

Erika lives in Fort Collins, Colorado, with husband Matt, son Chuck and daughter Piper. After Piper’s diagnosis with an ATAD3A mutation in 2023 and finding great value in connecting with other parents online while other sources of information were scarce, Erika was inspired to take the next step to help organize the first patient advocacy organization for ATAD3A mutations. She spent 15 years in the field of sustainable transportation, most recently at Colorado State University, before leaving the formal workplace in 2025 to care for Piper full time and advance the Alliance. She enjoys running, being outdoors and playing with her family.

Nanne Jager is the mother of Senna and lives with her family in the Barcelona region of Spain. She holds a Master of Science degree and has extensive experience in the recruitment industry, e-commerce, and online marketing. In addition to her professional background, she is the primary caregiver to her son Senna, who is affected by Harel-Yoon Syndrome (HYS). As a board member at large within the ATAD3A Alliance, she is deeply committed to accelerating research into ATAD3A-related disorders, with the ultimate goal of finding a treatment.

Leelee Kates serves as Treasurer of the ATAD3A Patient Advocacy Alliance. She brings over a decade of experience in healthcare administration, finance, and nonprofit leadership, currently serving as Associate Executive Director for the Colorado State University Health Network. Leelee became involved with ATAD3A after her close friend Erika’s daughter was diagnosed with Harel-Yoon Syndrome, inspiring her to support advancing awareness, advocacy, and support for families affected by rare mitochondrial disorders. She also serves on multiple boards addressing health equity and the social determinants of health that shape health outcomes. She also enjoys being active, running and hiking outdoors in Colorado with her dog.