RESOURCES
Trisomy 13
2022 Trisomy Awareness “SOFT” Wear Collection
March is Trisomy Awareness Month We are excited to release the 2022 Trisomy Awareness "SOFT" Wear Collection. Update: The special order of Trisomy Awareness Shirts is closed. You can still order...
The Erin Jorgensen Memorial Scholarship
When we first had our daughter Erin we imagined all of the highlights to come in her life: her first day of school, prom, going off to college, getting married. Once we were given her diagnosis,...
Video – Perspectives on the Care and Management of Children with Trisomy 13 and 18 Syndromes
Intermountain Children's Primary Hospital - Pediatric Grand Rounds John C. Carey, MD, MPH, FAAP, FACMG Emeritus ProfessorUniversity of Utah School of MedicinePediatric Genetics Primary Children’s...
SOFT 2021 Candle Lighting Remembrance Ceremony
From the SOFT 2021 Virtual Conference This is the replay of the 2021 Candle Lighting Remembrance Ceremony. Join us as we remember and honor our SOFT Angels.
Finding Words for our Grief
From the SOFT 2021 Virtual Conference Cora Welsh, M.A., CCLSRev. Matt Norvell, DMin., M.S., B.C.C. Pediatric Chaplain
Finding Solutions: Managing Photosensitive Seizures, Light Sensitivity and Ocular Health
From the SOFT 2021 Virtual Conference. Dr. Steven Cantrell, OD - Finding Solutions: Managing Photosensitive Seizures, Light Sensitivity and Ocular Health.
Supplemental Needs Trusts
From the SOFT 2021 Virtual ConferenceSupplemental Needs TrustsDaniel A. Kautz discusses what parents of children and adults with Trisomy conditions need to know about setting up Special Needs Trusts...
Lean on Us: An Overview and Review of TRIS Project Activities
From the SOFT 2021 Virtual Conference Lean on Us: An Overview and Review of TRIS Project ActivitiesDeborah A. Bruns PhD The Tracking Rare Incidence Syndromes (TRIS) project seeks to increase the...
