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SSC@IAN Families Come Through

Author: 
Marina Sarris
Posted: 
September 16, 2014

Photo of school lockers for article about autism and educationTime was short. It was August, and we needed to prepare a "back to school" article for the Interactive Autism Network (IAN) website. We needed to talk to some experienced parents about how to prepare students with autism for a new school year.

So we turned to the families of the "SSC@IAN." Several emails went out on a Tuesday. Within a few days, a number of parents had eagerly responded, finding time in their busy schedules to share back-to-school tips with IAN. "Anything to help a new generation of parents whose child is being diagnosed, to help them feel less lonely," explained parent Kristin Lupo.

That generosity is what we've come to expect from the SSC@IAN, or Simons Simplex Community@Interactive Autism Network. The group is made up of about 1,500 families who participated in an autism research project by the Simons Foundation Autism Research Initiative and joined the SSC@IAN. Each family has one member – a son or daughter – with autism spectrum disorder. (Simplex means one). They donated blood samples and personal information to the project in hopes that researchers would learn more about autism.

Scientists across the United States and Canada have done just that. They've used SSC data to investigate the genetics of autism, as well as speech development, independent living skills, head size, diagnoses, and medication usage, among other important topics.

Many of these families continue to contribute to the autism community. Some are participating in related research studies, and some, like the parents interviewed for the back-to-school article, are quick to reach out to other families with their advice, experience and know-how.

Thank you to an impressive group of families.

To find out how the families are doing today, the SSC@IAN will be contacting them this winter to update information about their children, treatment and school experiences. Stay tuned for more information on the SSC@IAN Family Update Study.

If you are an SSC@IAN member, and would like to be interviewed for an article, please contact us at IAN@kennedykrieger.org. To see what scientists have learned from the SSC, see Results of Research Made Possible by SSC Families. Read Helping Students with Autism Navigate Back-to-School Time, the article made possible by SSC@IAN families.

References: 

Learn more about IAN Research.

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