Recognizing Landmark Clinical Guidance and Honoring Dr. John C. Carey’s Lifetime Achievement in Genetics
ROCHESTER, NY, UNITED STATES, March 3, 2026 /EINPresswire.com/ — March 2026 marks Trisomy Awareness Month, a national observance dedicated to increasing awareness, advancing evidence-informed medical care, and strengthening support for families affected by Trisomy 18, Trisomy 13, Trisomy 9, and related rare trisomy conditions.
The Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) leads this annual initiative under its mission of Supporting Families and Changing the Narrative. Throughout March, families, clinicians, researchers, and advocates will participate in educational events, remembrance ceremonies, and public awareness efforts designed to elevate both scientific understanding and compassionate care.
Over the past decade, numerous states have formally recognized March as Trisomy Awareness Month through official proclamations. In 2026, SOFT continues to work with state leaders across the country to expand recognition and encourage deeper engagement among healthcare institutions, policymakers, and community partners.
March 2026 Calendar of Events
Throughout March, SOFT will host a series of virtual and online events designed to educate, connect, and honor families. Full details are available at https://trisomy.org/tam/.
March 1 – Trisomy Awareness Month Opening Ceremony (Virtual)
March 7 – Family Fun Night – Virtual community gathering
March 9 – Trisomy 9 Awareness Celebration (YouTube Live)
March 13 – Trisomy 13 Awareness Celebration (YouTube Live)
March 18 – Trisomy 18 Awareness Celebration (YouTube Live)
March 29 – Angel Remembrance Ceremony – Virtual tribute honoring children (date and registration details available online)
March 31st – Closing Ceremony – Closing Ceremony (YouTube Live)
In addition to these live events, SOFT will release additional educational videos, professional interviews, and podcast conversations throughout the month, highlighting clinical updates, family experiences, and emerging research in the field.
Trisomy Awareness Month provides space not only for formal education, but also for storytelling, remembrance, and shared reflection within the trisomy community.
Celebrating National Leadership in Genetics
Trisomy Awareness Month 2026 is further marked by an important milestone in the field of medical genetics.
John C. Carey, MD, MPH, internationally renowned clinical geneticist and SOFT’s founding medical professional, will receive the 2026 David L. Rimoin Lifetime Achievement Award from the ACMG Foundation for Genetic and Genomic Medicine.
This prestigious award recognizes a lifetime of contributions to clinical genetics and genomic medicine. Dr. Carey’s decades of scholarship, advocacy, and compassionate leadership have profoundly influenced the care of individuals with trisomy conditions and other genetic diagnoses.
His work has consistently emphasized ethical clarity, balanced counseling, and respect for families navigating complex medical decisions. The national recognition from the ACMG Foundation underscores the significance of his contributions to the field and reflects broader progress in how trisomy conditions are understood and discussed within medicine.
Landmark Medical Progress
During Trisomy Awareness Month 2026, SOFT is intentionally reminding the medical and advocacy communities of the groundbreaking clinical guidance released in 2025 — a milestone that continues to shape the evolving landscape of trisomy care.
On July 21, 2025, the American Academy of Pediatrics (AAP) published a landmark clinical report addressing the care of children with trisomy 13 and trisomy 18. The report reflects a measurable shift toward individualized, ethically grounded, and family-centered decision-making.
“On Monday, July 21, 2025, the American Academy of Pediatrics, the most prestigious professional organization in the field dedicated to the health of all children, published a Report online that is truly a landmark in the care of children with trisomy 13 and trisomy 18,” said John C. Carey, MD, MPH, Emeritus Professor in the Department of Pediatrics at the University of Utah School of Medicine and SOFT’s founding medical professional. “This Report masterfully complements the 2024 Consensus Document of the American Association of Thoracic Surgeons and together these documents advance the efforts to ‘change the narrative’ surrounding the care of infants and children with trisomy 13 or trisomy 18. But now we have to go further and change practice and implement the central messages of these important documents.”
The AAP guidance builds upon the 2024 consensus statement from the American Association of Thoracic Surgeons, reinforcing national momentum toward transparent counseling practices and shared decision-making models.
As part of this year’s observance, SOFT encourages healthcare providers and hospital systems to revisit these documents and continue integrating their principles into clinical pathways.
Growing Clinical and Institutional Engagement
SOFT acknowledges the increasing number of neonatologists, genetic counselors, obstetricians, palliative care specialists, nurses, ethicists, and hospital administrators who are actively seeking to refine counseling practices and clinical pathways for children with trisomy conditions.
Across the country, institutions are engaging in thoughtful discussions regarding ethical frameworks, surgical considerations, perinatal palliative care integration, and long-term developmental supports. This engagement reflects a broader cultural shift — one that recognizes both the dignity of each child and the importance of informed family-centered care.
Changing the Narrative
Trisomy Awareness Month is not solely about awareness of a diagnosis. It is about promoting accurate medical information, honoring children living with trisomy conditions, remembering those who have died with dignity, and supporting families across the continuum of care.
Landmark publications and national recognition represent meaningful progress. Continued implementation, interdisciplinary collaboration, and sustained public education will determine how fully that progress transforms practice and perception.
About SOFT
The Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) is a national nonprofit organization dedicated to supporting families affected by Trisomy 18, Trisomy 13, Trisomy 9, and related conditions. Through education, advocacy, conferences, and collaboration with medical professionals, SOFT works to ensure families are informed, connected, and empowered.
For more information about Trisomy Awareness Month 2026, state recognition efforts, or event participation, visit:
https://trisomy.org
Nick Holladay
SOFT
+1 480-241-9821
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Trisomy Awareness Month 2026 Opening Celebration | Trisomy 18, 13 & 9 | SOFT Live
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