SOFT Conference Brings Children with a Rare Genetic Disease to Omaha

July 19, 2018 - 3:46pm

The 32nd annual international SOFT conference is taking place in Omaha this week for children with trisomies and their families. SOFT stands for the Support Organization for Trisomy 18, 13 and Related Disorders and is a parent-driven, non-profit organization. The organization provides support to patients with trisomies and their families along with information and inspiration.

Trisomy 18 and 13 are genetic disorders that often lead to patients having heart defects and airway complications.

Children’s Hospital and Medical Center in Omaha partnered with SOFT to host the event this year. The event is paid for through fundraising and donations.

Conference Chair and mother of a Trisomy patient, Terra Spiehs-Garst, said the event impacts everyone involved in many ways.

“These kids, not only are they able to see other children with their same conditions, you know being able to see somebody that’s just like you is a huge thing,” Spiehs-Garst said. “The families receive support because there are other families that are going through and experiencing the same things, and we learn more about our children’s conditions. So as parents we are able to better advocate for our children.”

Spiehs-Garst also said there are a number of services for the siblings of trisomy patients, including a zoo day and workshops on how to handle their fears in regards to their siblings’ conditions.

Families will also get to sit down with physicians to learn how to help their children with the disorders in the future. Families are coming to Omaha from all over the nation and the world to the conference which goes through Sunday, July 22.

There is also a banquet to honor the medical professionals who give their time to the event. This year, Dr. Bruce Buehler, a pediatric geneticist, will be awarded with the organization’s Lifetime Achievement Award for his role in the beginning stages of SOFT.

For more information about the conference activities or the organization itself, visit https://trisomy.org/.

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