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 stronger than ever.
Our New and Expectant Parent Guides for Trisomy 18 and Trisomy 13 are gaining real traction, with more requests coming in each month. The Trisomy 9 guide is now in its final stages of review, and we hope to have it available by the end of the year. Each of these books has been written, reviewed, and edited by our dedicated SOFT Champion Doctors, alongside invaluable input from parents who shared what information families truly need most. Many SOFT families also generously contributed photos and stories—making these guides a genuine collaboration between medical expertise and lived experience.
Looking ahead, we’ve begun sending these resources to perinatal centers, OB clinics, and other medical facilities across the country so families can access trusted, compassionate guidance when it matters most. We know we don’t yet have a complete list, so if you know of a center near you that could benefit from these materials, please email me their address—your help ensures more families receive the support they deserve.
We’re also in the process of establishing a Care Package Fund, which will allow us to send these books and other supportive materials directly to families receiving a Trisomy 9, 13, or 18 diagnosis. It’s an exciting next step in expanding how we support families from the very beginning.
I also want to celebrate two extraordinary acts of generosity from September. RJ Manley’s parents hosted a heartfelt auction fundraiser in his memory, raising over $10,000 to support SOFT’s mission—an incredible tribute that will continue helping families in need. And Timmy McCabe, a cousin of a SOFT Angel, is completing his Boy Scout Eagle Project by creating sibling care packages for Trisomy families—a truly touching example of kindness and leadership in action.
If you’ve ever thought about organizing your own fundraiser or awareness project, I would love to help coordinate. These efforts not only sustain SOFT but also carry forward the compassion and hope that define our community. Please feel free to reach out to me directly if you’d like to get started.
You’ll find even more updates below, including the newly launched SOFT Library, where we’re highlighting books written by our members and others in the Trisomy community. This growing collection showcases the creativity, experience, and heart that make SOFT so special.
Finally, I invite you to visit our SOFT YouTube Channel to watch the latest video featuring a few of our members sharing what SOFT means to them. These stories continue to remind us that together, we’re not only supporting families—we’re changing the narrative.
Together in support and hope,
Nick Holladay
Executive Director, SOFT
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Celebrating RJ’s Life and Legacy
In honor of her son’s 10th birthday, Kahle Giesen and her family hosted the first-ever RJ Manley Memorial Fundraiser, turning love and remembrance into hope for other families.
Held at Manley Farms, the evening brought together loved ones for music, food, and a candlelight tribute celebrating RJ’s enduring light—
all to support families walking the Trisomy journey.
Trisomy Spotlight: Chapman
At SOFT, we cherish sharing the stories of our children and families. Our Trisomy Spotlight series highlights the unique lives and journeys of these amazing kids, like Chapman, whose love, awareness, and spirit left a lasting impact. These stories inspire connection, hope, and understanding across our community.
Read Chapman’s full story here:
Introducing the SOFT Library
Check out the SOFT Library! We’re highlighting books written by our community members. Have a book to share? Email Nick to submit it—our board reviews submissions to ensure they reflect SOFT’s mission of supporting families and changing the narrative.
Millie’s Gift: Cherish Every Heartbeat
Millie’s Gift is a new nonprofit created in memory of a baby girl named Millie, who was diagnosed in the womb with Trisomy 13 and passed away just three days after birth. Her family’s journey inspired a mission to support others walking a similar path.
They provide free weekly Bonding Ultrasounds, emotional and grief support, and practical help for families who choose to carry after a life-limiting prenatal diagnosis.
We’re thrilled to team up with and support Millie’s Gift as they bring light and love into some of life’s hardest moments.
Eagle Scout Project: Supporting Trisomy Siblings
Inspired by his cousin Moya, Timmy McCabe is creating comfort kits for siblings of children with Trisomy as part of his Eagle Scout project. Help Timmy bring encouragement and joy to these amazing brothers and sisters.
SOFT Awarded Candid Gold
SOFT is proud to earn Candid’s Gold Seal of Transparency! This recognition reflects our commitment to openness, accountability, and trust. Families, donors, and partners can have confidence in our programs and resources as we continue supporting those affected by Trisomy. Learn more about this honor and what transparency means for our work.
Pregnancy & Infant Loss
October is Pregnancy & Infant Loss Awareness Month, a time to honor and remember the little ones who have touched our lives. Some of our SOFT members have shared resources they’ve found helpful, from safe sleep awareness to specialized postpartum care.
We just wanted to pass these along to provide support and guidance for families navigating these difficult journeys.
Celebrating Down Syndrome Awareness
October is also Down Syndrome Awareness Month! We are proud to work with and support the amazing organizations behind these groups. Check out these resources to learn more, find support, and connect with families navigating a Down syndrome journey.
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