Talking Trisomy
Videos and Podcasts
Expert conversations, family stories, and clinical education on Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome disorders.
Stories from Families Like Yours
Every family's trisomy journey is different. These conversations come from parents who have been where you are, navigating a diagnosis of Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), or Trisomy 9 and figuring out what comes next.
From Tahoe to Trisomy: The Carey and Showalter Families on 50 Years of Friendship
Dr. John Carey, Leslie Carey, Dr. Scott Showalter, and Vivian Showalter share how a friendship that began at UC Berkeley in 1975 became five decades of changing the narrative for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) families.
From Tahoe to Trisomy: The Carey and Showalter Families on 50 Years of Friendship
Dr. John Carey, Leslie Carey, Dr. Scott Showalter, and Vivian Showalter share how a friendship that began at UC Berkeley in 1975 became five decades of changing the narrative for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) families.
Stacy's Story: 36 Years with Trisomy 18 and Changing the Narrative
Barb VanHerreweghe shares how her daughter Stacy, born in 1981 with Trisomy 18 (Edwards syndrome) and sent home with no answers, went on to live 36 extraordinary years and change the lives of families across the country.
Trisomy 18 vs Edwards Syndrome, Trisomy 13 vs Patau Syndrome: What Is the Real Difference
Dr. John Carey and Kris Holladay explain why Trisomy 18 and Edwards syndrome are not always interchangeable, and why that distinction matters for families and clinicians at the moment of diagnosis.
Izzy's Story: Defying Every Expectation with Trisomy 13
Colton and Kailey Farmer share their daughter Izzy's journey with Trisomy 13 (Patau syndrome), from a difficult prenatal diagnosis to the thriving seven year old who lights up every room.
Faith's Trisomy 13 Story: Courage, Connection and Love
Air Force pilot Raliene Banks shares Faith's Trisomy 13 (Patau syndrome) story, from prenatal diagnosis through Faith's seven days of life, and how SOFT helped guide their family's path.
Ryan's Story: How One Trisomy 18 Family Helped Shape SOFT
Steve and Peggy Cantrell share their Trisomy 18 (Edwards syndrome) journey with son Ryan, the origin of SOFT's balloon tradition, and new research on light sensitivity, seizures, and nutrition.
Trisomy 9 Families and Experts: Stories, Research and Support
Families and medical experts discuss Trisomy 9, mosaic Trisomy 9, and Trisomy 9p, covering diagnosis, available research, community support, and the new Trisomy 9 guidebook from SOFT.
Caitlin's Story: A Mother's Journey with Trisomy 18
A mother shares her experience navigating a Trisomy 18 (Edwards syndrome) diagnosis and why connection to other families made all the difference. A candid conversation about what support really looks like.
What the New AAP Guidelines Mean for Your Family
Dr. Alaina Pyle and Dr. John Carey explain the American Academy of Pediatrics report on Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) in plain language, and why it matters for families making care decisions today.
Share Your Story on Talking Trisomy
Are you a family with a Trisomy 18, Trisomy 13, or Trisomy 9 story to tell? A clinician or researcher with something important to share? We would love to hear from you. The application takes about five minutes.
Write Your Family's Story
Prefer to write instead of record? If your family has been touched by Trisomy 18, Trisomy 13, Trisomy 9, or a related condition, you can submit a written story for the SOFT blog.
Clinical Education and Expert Conversations
Interviews with clinicians, genetic counselors, and researchers on Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome disorders. Each episode links to a written post with referenced resources you can share with patients.
Changing the Narrative: The AAP Report on Trisomy 18 and Trisomy 13
Nick Holladay sits down with Dr. Alaina Pyle, neonatologist, bioethicist, and lead author of the AAP clinical report, and Dr. John Carey, SOFT cofounder and emeritus professor of pediatrics at the University of Utah. They discuss what the new guidance means for families, for clinicians, and for the future of care for children with Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome).
Trisomy 18 vs Edwards Syndrome, Trisomy 13 vs Patau Syndrome: What Is the Real Difference
Dr. John Carey and Kris Holladay explain why Trisomy 18 and Edwards syndrome are not always interchangeable, and why that distinction matters for families and clinicians at the moment of diagnosis.
The Trisomy Care Collaborative at Lurie Children's Hospital
Dr. Natasha Henner and Grace Knowles discuss how the Trisomy Care Collaborative at Lurie Children's Hospital approaches coordinated care for Trisomy 18 and Trisomy 13 families, and what other clinicians can learn from the model.
Trisomy Awareness 2026: Medical Panel Q and A
Medical experts answer questions submitted by families about Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) care. Topics include surgical decision making, life expectancy research, and palliative care options.
Trisomy 9: What Clinicians and Families Need to Know
An in depth look at Trisomy 9, mosaic Trisomy 9, and Trisomy 9p, covering current research, how families receive a diagnosis, what clinical support exists, and the new SOFT Trisomy 9 guidebook.
Creating the New and Expectant Parent Books for Trisomy 18 and Trisomy 13
A SOFT panel discusses how the New and Expectant Parent Books for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) were developed for the moment of diagnosis and built with clinicians and families together.
Share Your Expertise on Talking Trisomy
Are you a clinician or researcher working with Trisomy 18, Trisomy 13, Trisomy 9, or related rare chromosome disorders? We would love to hear from you. The application takes about five minutes.
AAP Care Guidance for Trisomy 13 and Trisomy 18
The American Academy of Pediatrics released updated clinical guidance on Trisomy 13 (Patau syndrome) and Trisomy 18 (Edwards syndrome) care. Read SOFT's overview and access the full report.
All Talking Trisomy Episodes
Every episode of the Talking Trisomy podcast, covering Trisomy 18 (Edwards syndrome), Trisomy 13 (Patau syndrome), Trisomy 9, and related rare chromosome disorders. Family stories, clinical conversations, and research updates in one place.
Stacy's Story: 36 Years with Trisomy 18 and Changing the Narrative
Barb VanHerreweghe shares how her daughter Stacy, born in 1981 with Trisomy 18 (Edwards syndrome), went on to live 36 extraordinary years and change the lives of families across the country.
From Tahoe to Trisomy: The Carey and Showalter Families on 50 Years of Friendship
How a friendship that began at UC Berkeley in 1975 became five decades of changing the narrative for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) families.
Changing the Narrative: The AAP Report on Trisomy 18 and Trisomy 13
Dr. Alaina Pyle, lead author of the AAP report, and Dr. John Carey on what the new clinical guidance means for families and for clinicians.
Creating the New and Expectant Parent Books for Trisomy 18 and Trisomy 13
How the New and Expectant Parent Books for Trisomy 18 (Edwards syndrome) and Trisomy 13 (Patau syndrome) were developed, who they are for, and how to get them to families at diagnosis.
Share Your Story on Talking Trisomy
Are you a family with a Trisomy 18, Trisomy 13, or Trisomy 9 story to tell? A clinician or researcher with something important to share? We would love to hear from you. The application takes about five minutes.
