The Trisomy 13 and 18 Collaborative today announced the hiring of its first Executive Director, Virginia (Ginger) Spitzer, who brings a wealth of experience leading nonprofits in the healthcare space.
Founded in 2024, the Trisomy Collaborative is dedicated to working with healthcare practitioners, researchers and families to ensure that those impacted by trisomies 13 and 18 have the best information to make the best choices for themselves. The Collaborative pursues innovative research that advances clinical knowledge and develops educational resources for families and clinicians.
Ms. Spitzer is an experienced leader and strategic thinker, who comes to the Collaborative with a history of success in leading mission-driven health and research organizations. Her focus has long been on building bridges between clinicians, researchers, patients, and families—exactly the skills needed for the Collaborative as it builds its programs.
Ginger Spitzer, new Executive Director of the Trisomy Collaborative, said:
“Families facing Trisomy 13 and 18 have many difficult medical decisions to make every day. I am excited to join this experienced team that is helping ensure that families have the most accurate, balanced, and current information to do so.
“I have spent much of my career dedicated to improving the lives of patients and families facing serious health challenges and have learned that developing an understanding between clinicians, patients, and families is the best way to ensure quality care. The Collaborative’s work to tie research, clinical expertise, and family experience is both innovative and imperative for the future treatment of trisomies 13 and 18.”
Trisomy 13, also known as Patau syndrome, and trisomy 18, also known as Edwards syndrome, are genetic conditions that affect between 1 and 10,000 and 1 and 5,000 live births, respectively. Many physicians are taught that these conditions are “incompatible with life,” and to advise families against medical intervention without considering each unique situation. Yet contemporary research shows that medical intervention can allow 20% of these children to live past one year, and when families make this choice, a vast majority report happy and meaningful family relationships.
Jeffery Botkin, MD, Chair of the Trisomy Collaborative Advisory Board, said:
“We could not be more thrilled to have Ginger Spitzer on board. She brings to the Collaborative the exact kind of leadership skills and experience we need to take our young organization to the next level. Together, we look forward to furthering our research and programs to improve the lives of families affected by trisomies 13 and 18.”
