About Us

Our Mission

Supporting Families, Changing the Narrative

Values

SOFT values education to empower families and professionals through the Trisomy journey. SOFT values and celebrates hope through sharing our stories to celebrate the legacy and value each child brings to their Trisomy journey. SOFT values research, discovery and current knowledge of the science of Trisomy conditions that lay the foundation of treatment and innovative therapies.
SOFT values our unique community of families and professionals by promoting a culture of support, respect and acceptance for all. SOFT values respect for each family’s decision through a culture that regards each child as unique and deserving of dignity.

Impact

With the help of supporters, volunteers and donors SOFT is able to make an impact on the lives of Trisomy children and their families.

Registered Families

Registered Professionals

Non-profit

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A Brief History

SOFT started in 1979 in Salt Lake City, Utah through the magical meeting of two young mothers, both with 2 year old daughters born with trisomy 18. The experience was so profound, Kris Holladay and Pam Watson made a promise to create a way for other families to find one another and share their stories and offer support.

About the same time, Dr. John Carey accepted a position at the University of Utah. The day Kris met Dr. Carey was memorable! His compassion was extraordinary. Along with Kris and Pam, he was determined to form a support organization for families with trisomy 18, 13, and related disorders. SOFT was officially created and incorporated on September 10, 1980. SOFT is grateful for Dr. John Carey and the professionals in all fields who offer support and expertise.

Reaching out and finding families became our priority. Social media as we know it today did not exist. We met our first family through a newspaper article describing SOFT, a newly formed support group. Also, Dr. Carey bravely shared our information with his professional peers. Referrals started slow, but by 1981 SOFT was growing faster than we could have ever imagined.

To keep our members in touch over the many miles that separated us, we published a newsletter. We shared our stories and embraced our joys and heartaches.

In 1987, the first SOFT Conference was held in Salt Lake City, Utah. Parents brought their children in their arms or in their hearts. Tears came first, then smiles and laughter. Annual SOFT Conferences continue to this day generously hosted by families in various cities.