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)...
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...
Trisomy Spotlight – Chapman
What is something unique and special about your child with trisomy that you wish more people knew? Chapman was so aware! He had the best clenched fists ever. His hands were my favorite! His eyes would just stare right into your soul. He knew when Mommy and Daddy were...
Trisomy Awareness Month Spotlight – Heidi Gano
What is something unique and special about your child with trisomy that you wish more people knew? Aryabelle is a truly unique individual. Despite her diagnosis, she is generally a cheerful baby girl. While her mood can vary, she often rewards those around her with...
Trisomy Awareness Month Spotlight – Mira Lopez
What is something unique and special about your child with trisomy that you wish more people knew? She graduated, went to prom and visit her sister and family in South Dakota 3 weeks prior to her passing. Her favorite thing was water and her pop ball toy and musical...
Trisomy Awareness Month Spotlight – Diana Moran
What is something unique and special about your child with trisomy that you wish more people knew? Every case is different, we should give all kids a chance. Why do you believe raising awareness about trisomy conditions is important, and how can others make a...
Trisomy Awareness Month Spotlight – Kathy and Joe Shnowski
What is something unique and special about your child with trisomy that you wish more people knew? We received her diagnosis when I was 7 months pregnant, they said it was terminal. She entered this world on Nov 22, 1991 and she wrote her own story, she lived 5.5...
Trisomy Awareness Month Spotlight – Adela Malave
What is something unique and special about your child with trisomy that you wish more people knew? Hola SOFT families this is Vanessa and she just turned 21! We are so very blessed to have her in our lives as she is quite sassy and we love her sweet smiles! Her smiles...
SOFT Newsletter – September 2025
Dear SOFT Families and Friends, The SOFT Newsletter is back! For many years, the printed newsletter was a treasured way our community connected, celebrated, and lifted each other up. Now, we’re bringing that tradition into your inbox—fresh, renewed, and filled with...