How SOFT Began: A Founding Story for Trisomy Awareness Month 2026
March is Trisomy Awareness Month — a time when families, medical professionals, and advocates unite to share knowledge, raise visibility, and honor the lives of children and adults living with trisomy 18 (Edwards syndrome), trisomy 13 (Patau syndrome), and related chromosomal conditions.
This year, as SOFT prepares to host its 40th Annual Conference in Loveland, Colorado, we are sharing a piece of history that few organizations are fortunate enough to have documented so personally. Below, SOFT Medical Advisor Dr. John C. Carey, MD — one of the original co-founders of SOFT — shares the story of how it all began: a chance connection in a clinic room in Salt Lake City, a mother’s vision, and a small gathering of families that would grow into a decades-long community of support and advocacy.
Whether you are a family navigating a new diagnosis, a genetic counselor seeking resources for your patients, or a longtime SOFT member, this story is for you.
Dr. Carey’s Story
The following is written by Dr. John C. Carey, MD, Medical Advisor, SOFT.
My SOFT story begins in a clinic room during the late summer of 1979 just after Leslie and I had just moved to Salt Lake City, and I had joined the faculty of the University of Utah, fresh out of my training in medical genetics in San Francisco. One of my new colleagues in Utah, Dr Bruce Buehler (now a known champion of SOFT), referred Kari Holladay, then 2 years old, to me because he knew of my deep interest in chromosome syndromes. Kari had full trisomy 18. I remember fondly that Kris and I connected right away and soon agreed that there was a definite need for a national support group for parents of children with trisomy 18. This was the time in the history of human genetics that advocacy and support groups for families of persons with genetic conditions were just beginning to be established; the Down syndrome Congress had been formed a few years before. Kris was in contact with two other mothers of young children with trisomy 18 at the time, which formed the nest for the group. Kris creatively came up with the name for the group, Support Organization for Trisomy 18. Over the years I continue to appreciate the beauty and multi-layered nature of her choice of words. Kris also had contact with Pat Farmer in Pocatello Idaho, mother of a son with trisomy 13, and from there we added trisomy 13 because of the many similar challenges to T18.
Our first official “gathering” occurred in springtime 1980 when five families of children with trisomy18 and two with trisomy13 met at a community center in Salt Lake City. The photo of the five children with T18 sitting on the couch is a classic snapshot of the time, and I show it in my seminars and lectures on trisomy 13 and 18. Soon after, I sent a letter to the membership of the American Society of Human Genetics, the only professional organization for the field at the time, letting the members know of SOFT and Kris’s contact information (at that time only a home address and phone number). I have no idea how many contacts that Kris made from that letter, but it certainly provided an awareness of the organization to the genetics community. (About a year after the mailing I was at a genetics conference and two doctors-not knowing I sent the letter- talked about SOFT.) The story continues: the same Bruce Buehler that I mentioned above had moved to the University of Nebraska in 1981, a very sad event for Leslie and me, but apparently good for his career trajectory. Bruce was able to gather resources together to publish a book that Kris and I wrote with two genetic counselors, one working with Bruce in Omaha, “Trisomy 18: a book for families”. Its light grey cover doesn’t reflect the monumental nature of this book: there were few resources of this type in the 1980s.
Initially SOFT grew slowly but then more rapidly and by the mid1980s, Kris and I- with the invaluable help of a wonderful admin person in our genetics office- planned to host a national conference for families. That inaugural event occurred in Salt Lake City in 1987 and from there SOFT blossomed… I have had the distinct pleasure and honor of attending every SOFT conference since the premier- now one year shy of four decades ago.
Respectfully submitted, John C. Carey, MD Medical Advisor, SOFT
The First Gathering, Salt Lake City, May 1980 — families and children with trisomy 18 and trisomy 13 gathered at a community center. Dr. Carey is seated at the far right. This small but historic meeting marked the beginning of what would become a national community.
Kari Holladay at 2 years old — the little girl whose referral to Dr. Carey in 1979 sparked the friendship and shared vision that would become SOFT. “What a great smile!” — Kris Holladay
The couch photo — five children with trisomy 18 at the First Gathering, May 1980. Left to right: Rachael Watson, Kari Holladay, Brandy Woodcox, Kimberly Richins, and Tannyn Person. Dr. Carey shared this photograph in lectures and presentations for many years.
Dr. John Carey speaking at an early SOFT event — the beginning of a relationship with this community that would span nearly five decades.
The Second Gathering, January 1982.
The Second Gathering, January 1982.
The original “Trisomy 18: A Book for Families,” co-authored by Kris Holladay and Dr. John Carey. Its modest grey cover, as Dr. Carey writes, “doesn’t reflect the monumental nature of this book.”
Kris Holladay, Kari Holladay and Dr. John Carey at the Second Gathering, January 1982
About Trisomy 18 and Trisomy 13
Trisomy 18, also known as Edwards syndrome, occurs when a person has three copies of chromosome 18 instead of the usual two. It is one of the most common chromosomal conditions, occurring in approximately 1 in 2,500 pregnancies. Trisomy 13, or Patau syndrome, involves an extra copy of chromosome 13 and occurs in approximately 1 in 5,000 pregnancies. Both conditions present significant medical complexity, and families navigating these diagnoses benefit enormously from connection, current information, and community — the core of what SOFT provides.
About SOFT
The Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) was founded in 1979 and has grown into the leading nonprofit organization in North America dedicated to these conditions. SOFT connects families with medical resources, peer support, and the annual SOFT Conference — a gathering that brings together parents, siblings, medical professionals, and researchers each year.
About Dr. John C. Carey
Dr. John C. Carey, MD is a Professor of Pediatrics and Medical Genetics at the University of Utah School of Medicine and has served as SOFT’s Medical Advisor since the organization’s founding. He is one of the world’s foremost experts on trisomy 18 and trisomy 13 and has dedicated his career to improving outcomes and quality of life for children and families affected by these conditions.
Published during Trisomy Awareness Month, March 2026. Tags: Trisomy Awareness Month, Trisomy 18, Trisomy 13, Edwards Syndrome, Patau Syndrome, SOFT Conference, SOFT History, Medical Genetics, Family Support, Chromosomal Conditions
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