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 the same heart and hope.
This summer has been full of meaningful moments. In July, we gathered for the 39th SOFT Conference in Indianapolis, where families, children, and medical professionals came together to learn, connect, and celebrate.
We also witnessed a landmark moment for our community with the American Academy of Pediatrics’ new guidance on caring for children with trisomy 13 and trisomy 18. This report affirms what SOFT families have long known—that medical care should be individualized and grounded in hope.
As I prepared to restart the newsletter, I revisited past issues and came across one of Kris Holladay’s SOFTLY SPOKEN reflections from 2013. In it, she described seeing a rare circular rainbow—an image of wholeness and perspective—but more importantly, she shared how stories in the SOFT newsletter once changed a doctor’s approach to families. It was a reminder that when we share, others begin to understand the beauty our children bring. These stories have always mattered, and they continue to shape how families, doctors, and communities understand and value our children.
It is more important than ever to continue sharing our stories and the good news that flows from within SOFT and the trisomy community. That’s exactly what I hope this revived newsletter will be: a place to lift the voices of our families, celebrate joy and resilience, and remind us that—even in the hardest moments—there’s always room for light, laughter, and connection.
In this issue, you’ll find updates on upcoming events, a look back at our recent BBQ gathering in Utah, a chance to help name this very newsletter, and a highlight reel from our 2025 SOFT Conference.
Welcome back to the SOFT Newsletter. I’m so glad you’re here with us on this journey.
With gratitude and excitement,
Nick Holladay
Executive Director, SOFT
Hope Comes Full Circle
Back in 2013, Kris Holladay shared a SOFTLY SPOKEN reflection about the impact of families’ stories in the SOFT newsletter. What if a story could change the way a doctor speaks to every family they meet? Her words remind us that the voices of our children and families can touch hearts in ways we may never realize.
We Need Your Help!
SOFT is getting a brand-new newsletter name, and you get to help us choose. Vote for your favorite and be part of this fun refresh for our community.
2025 Conference Video
Relive the joy and connection of the 39th SOFT Conference in Indianapolis! From the ice cream social to the Angel Ceremony, families, children, and medical professionals came together to celebrate, learn, and support one another. We’re excited to share a special highlight video that captures the heart of our time together.
Trisomy Spotlight Stories
One of the most meaningful parts of SOFT is sharing the journeys of our children and families. Our blog features regular Trisomy Spotlight stories, like this one about Tabitha Grace. These stories bring awareness, encouragement, and connection across our community.
Click here to share your story—we’d love to feature yours, too!
Expectant Parent Meeting
Date & Time: Tuesday, October 5 at 12:00 PM PST
If you are currently expecting a baby diagnosed with a trisomy condition, we invite you to join SOFT’s upcoming Expectant Parent Zoom. These gatherings provide a safe, supportive space to ask questions, hear from other families, and find encouragement from those who have walked this path before. We hope you’ll join us and connect with a community that understands.
Utah SOFT Families BBQ
On August 16th, 2025, SOFT families gathered in Utah for our annual BBQ hosted by Jim and Debbie Dye. Longtime friends reconnected, new families joined in, and the afternoon was filled with food, laughter, and community.
A big thank you to everyone who came out — and to Jim and Debbie for opening their home!
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