BLOGS
American Academy of Pediatrics Issues Historic Guidance on Trisomy 13 and Trisomy 18 Care
FOR IMMEDIATE RELEASE: Landmark report states "no ethical justifications for universal, principle-based differential treatment" based solely on genetic diagnoses ROCHESTER, NY – July 23, 2025 – Support Organization for Trisomy 18, 13 and Related Disorders (SOFT)...
2025 SOFT Impact Report: Advancing Family-Centered Support for Trisomy 18, Trisomy 13, and Trisomy 9
2025 SOFT Impact Report Families facing a diagnosis of Trisomy 18, Trisomy 13, Trisomy 9, or related conditions often encounter complex medical information, limited resources, and profound emotional uncertainty. At SOFT, our mission is to ensure families are not...
November 2025 Donor Thank You | Honoring Our SOFT Community of Trisomy Support
With Gratitude: Honoring Our November 2025 Donors As we reflect on the month of November and enter the season of gratitude, we want to pause and offer our sincere thanks to the individuals and families who supported SOFT during this time. Each gift—whether given in...
A Trisomy 13 Journey of Courage, Grace, and Support: The Story of Faith Banks
When Air Force pilot Raliene Banks learned her daughter Faith likely had Trisomy 13, her world shifted instantly. What followed was a journey of love, gut-wrenching decisions, grace, and a legacy that continues to touch families today. This full-length conversation is...
A Trisomy 18 Journey of Courage, Care, and Joy: The Story of Dane Sogge
When families first hear the diagnosis Trisomy 18, also known as Edwards syndrome, they often face a tidal wave of fear, medical uncertainty, and conflicting information. In this powerful SOFT Podcast episode, Jen and Steve Sogge—both parents and physicians—openly...
How SOFT Created the Trisomy 18 & Trisomy 13 Expectant Parent Books: A Deep Dive on the SOFT Podcast
How the Trisomy 18 and Trisomy 13 New and Expectant Parent Books Came to Life Families who receive a Trisomy 18 (Edwards syndrome) or Trisomy 13 (Patau syndrome) diagnosis often describe their first days as overwhelming — a moment when information feels contradictory,...
SOFT Community Gratitude Report — October 2025 Donors
At SOFT, everything we do is rooted in compassion: Supporting Families and Changing the Narrative surrounding Trisomy 13, Trisomy 18, Trisomy 9, and related diagnoses. That work is only possible because of the extraordinary generosity of the families, friends, and...
AAP Report on Trisomy 18 and 13: How New Guidance Is Changing Care for Families and Clinicians
A Historic Shift in Trisomy Care The AAP Report on Trisomy 18 and 13 represents one of the most significant shifts in neonatal ethics and family care in decades.In this episode of the SOFT Podcast, Executive Director Nick Holladay speaks with Dr. Alaina Pyle,...
COMING SOON: Room 119 — A Trisomy 13 Story of Love and Courage
Discover Room 119 — Michelle Stewart’s moving true story of baby Adaeze, a three-pound miracle who changed lives through her love and courage.
Living in the Moment with Bree: A Family’s Journey with Trisomy 13
Discover Bree’s story — a powerful short film about a family’s journey with Trisomy 13, shared by Holland Bloorview Kids Rehabilitation Hospital.
SOFT Newsletter October
Dear SOFT Families and Friends, As we move into the final months of the year, I’m encouraged by the incredible progress we’re seeing across the SOFT community. From new educational resources to inspiring family-led projects, momentum continues to build—faster and...










































