2025 SOFT Impact Report

Families facing a diagnosis of Trisomy 18, Trisomy 13, Trisomy 9, or related conditions often encounter complex medical information, limited resources, and profound emotional uncertainty. At SOFT, our mission is to ensure families are not alone—at diagnosis, throughout care, and in moments of remembrance.

The 2025 SOFT Impact Report reflects how that mission comes to life. It offers a clear snapshot of SOFT’s work over the past year, highlighting how family-centered support, education, and collaboration with clinicians come together to meet real needs within the trisomy community.

What Is the SOFT Impact Report?

The SOFT Impact Report is a yearly reflection on how our community, programs, and partnerships support individuals and families affected by trisomy conditions. It brings together our efforts across education, peer support, clinical collaboration, and organizational growth into one accessible resource.

This year’s report reflects a period of increased capacity and intentional growth, while staying grounded in SOFT’s core commitment to compassionate, evidence-informed, and family-centered care.

Highlights from the 2025 Impact Report

The report outlines several key areas of impact, including:

Support for a national community of nearly 4,000 SOFT member families
Expanded New & Expectant Parent educational resources, including multilingual and diagnosis-specific materials
Quarterly digital support meetings for new and expectant parents at the point of diagnosis
Record participation at the SOFT Annual Conference, bringing families and clinicians together
Ongoing parent-to-parent connection, sibling and family support activities, and remembrance spaces
Renewed communication through newsletters, podcasts, and digital outreach
Strengthened organizational capacity to support long-term sustainability

Together, these efforts reflect SOFT’s role as a steady presence for families navigating the full spectrum of experiences related to trisomy—living, caregiving, decision-making, and loss.

Why This Matters for Families and Clinicians

For families, the Impact Report offers reassurance that meaningful, compassionate support exists beyond the moment of diagnosis. It reflects a community that understands both the medical and emotional realities families face.

For clinicians and care teams, the report provides insight into how peer support, diagnosis-specific education, and family-centered resources can complement clinical care. SOFT resources are frequently used alongside prenatal, neonatal, pediatric, and palliative care to help families access accurate information and connection at critical moments.

The Impact Report is also intended as a resource for:

Genetic counselors and healthcare providers
Hospital and neonatal care teams
Researchers and academic collaborators
Funders and philanthropic partners
Advocacy organizations and community groups

Download the 2025 SOFT Impact Report (PDF)

Click Here to Download the 2025 SOFT Impact Report – PDF

We encourage families, clinicians, and partners to share this report with others who may benefit from learning more about SOFT’s work and the trisomy community.

Looking Ahead

As we move into the coming year, SOFT remains focused on expanding structured parent-to-parent support, strengthening clinical collaboration, and increasing access to multilingual, diagnosis-specific education. We are also committed to improving evaluation and data collection to better understand and communicate impact.

We are deeply grateful to the families, volunteers, clinicians, board members, donors, and partners who continue to shape SOFT and sustain this work.

Thank you for being part of the SOFT community.