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)...
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...
SOFT Earns Gold Seal of Transparency from Candid — Building Trust Through Openness and Impact
At SOFT (Support Organization for Trisomy 18, 13, and Related Disorders), transparency and trust are at the heart of everything we do. Families turn to us for reliable support, compassionate guidance, and practical resources, and donors trust us to use every...
Honoring RJ’s Light: The Manley Family’s Tribute Shines Bright
On September 18, 2015, Kahle Giesen and RJ’s father welcomed their son, RJ Manley, into the world. Born with Trisomy 18, RJ lived for two precious days. Though his time was short, his life continues to shine through the compassion and purpose his family brings to...
Submit Your Child’s Story – Theo Gonzalez
A Life Measured in Love: Remembering Our Miracle, Theo Our Son, Our Fighter We found out early in my second trimester that our baby boy had Trisomy 13 — a rare and severe genetic condition. From that moment, our journey became one of faith, strength, and...










































