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Iowa Fragile X Clinic (CDD IA UCEDD) Open House Offers Training While Fostering Peer Support

May 2, 2013

On April 13, the Center for Disabilities and Development (CDD), Iowa's UCEDD, hosted an open house for families of children with fragile X syndrome.  According to Dianne McBrien, M.D., Clinical Associate Professor of Pediatrics at the University of Iowa Carver College of Medicine and medical director of the University of Iowa Children's Hospital Fragile X clinic, approximately 70 people, including many extended family members, attended.

"The clinic is relatively new, opening in 2010," explains McBrien.  "We held our first open house in 2012 in an attempt to reach out to families. The event was so successful that we decided to repeat it in 2013."

Karen Younkin, Senior Occupational Therapist at CDD,  keynoted the event, sharing suggestions for accommodating the sensory needs of individuals with fragile X syndrome. Many families came to the open house for information about research and clinical topics which might benefit their children. Others returned or participated for the first time to experience the camaraderie and peer support.

"Peer support was the primary reason for holding the event this year," explains McBrien.  "At last year's open house, we observed how important it was for families to connect with and learn from one another."

Fragile X Clinic Coordinator Jennifer Luria recruited and trained UI social work and recreation studies majors to provide child care during the event. Children participated in fun activities and received a special T-shirt designed by CDD graphic artist Dick Huber.

Prior to departing, each family was invited to pose for a portrait.  "The family portraits were very meaningful, especially for some extended families who have limited opportunities to spend time together," McBrien said.

If you would like more information about the Fragile X Clinic at CDD, contact Jennifer Luria, [email protected].  To learn about CDD's comprehensive clinical services, visit http://www.uichildrens.org/childrens-content.aspx?id=228498.  For further information on fragile X syndrome, visit www.nfxf.org.