It is with deep sadness that the Smith-Lemli-Opitz Foundation announces the passing of Dr. John Marius Opitz, a distinguished geneticist renowned for his co-discovery of Smith-Lemli-Opitz syndrome (SLOS) in 1964. SLOS was initially named RSH, a non-descriptive acronym of the first letters of the original patients’ surnames. Its name was later changed in order to honor the three geneticists who first described this disorder; David W Smith, Luc Lemli and John Opitz at the University of Wisconsin.

Dr. Opitz’s groundbreaking identification and characterization of Smith-Lemli-Opitz syndrome (SLOS) stands as a testament to his exceptional contributions to medical genetics. This discovery, alongside the numerous other syndromes he identified and classified, not only advanced scientific knowledge but also provided critical insights, understanding and support to families affected by rare genetic conditions worldwide.

Throughout his illustrious career, Dr. Opitz held esteemed positions at various prestigious institutions, including the University of Wisconsin, University of Iowa, University of Montana, and University of Utah. As a dedicated educator and mentor, he inspired and guided generations of students and researchers, instilling in them a passion for genetic research. Colleagues and students remember him not only for his intellectual rigor but also for his kindness, humility, and unwavering dedication to his field.

During the six decades of his career, he received many honors and honorary degrees and is widely regarded as one of the pioneers in human and medical genetics.

Beyond his professional achievements, Dr. Opitz was a devoted family man and a cherished member of his community. He is survived by his wife of 35 years, Dr. Susan Lewin and their daughter Emma (Mark). He is also survived by children Lea (Keith), Teresa (Brian), John, Sonti, first wife Marian, and grandchildren Lauren (Nick), Nate (Tiffany), Greg, Darya, Fauna, Violet, and Max. He is survived by dog Hailey, parrot Darwin, and cat Goldie. He joins his son, Felix, who died previously. His body was donated to the Body Donor Program at the University of Utah.

Dr. John Marius Opitz’s passing is a profound loss to the field of genetics and to all who had the privilege of knowing him. His legacy will endure through his scientific contributions, the many lives he touched, and the enduring spirit of inquiry and compassion he instilled in those who followed in his footsteps. His commitment to improving the lives of patients and families living with rare diseases has undoubtedly impacted each of us caring for a child with Smith Lemli Opitz syndrome.

“My daughter has Smith Lemli Opitz. She was born in 1987. I had the pleasure of meeting Dr. Opitz at our conference in 1997. He was so gracious with meeting some of us. He will always have a special place in our hearts. Julie is now 36 years old and doing well.”
–Lynn Richard