WI UCEDD Hosts National SOFT Conference

October 12, 2017

The Waisman Center at the University of Wisconsin-Madison hosted part of the 31st annual Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) conference.  SOFT provides "support and understanding to families...surrounding the diagnosis and care in trisomy 18, 13 and other related chromosomal disorders." SOFT conferences include educational workshops, access to specialty health care providers, and an opportunity for parents and families of children diagnosed with these genetic conditions to engage in a variety of social activities.

The clinical aspect of this year's conference took place at the Waisman Center UCEDD, in partnership with UW Health and the American Family Children's Hospital. The Waisman Center has 11 specialty clinics and a long history of research as well as providing care and services to individuals with developmental challenges. Clinicians, including cardiologists, neurologists, geneticists, and developmental pediatricians, as well as LEND program trainees volunteered their time to meet with 40 families and offer individualized suggestions and ideas.

Clinicians, trainees, researchers and volunteers gained a new understanding of these conditions through a talk by John Carey, MD, an international trisomy expert at the University of Utah, and through the hands-on clinical consults.  David Wargowski, MD, a clinical biochemical geneticist at the Waisman Center, spoke to the value of learning directly by interacting with the families and their children: "It was a wonderful experience and a powerful reinforcement