Health & Disability

April 3, 2007 • Volume 2, Number 1


AUCD-NCBDDD COOPERATIVE AGREEMENT NEWS AND UPDATES

Research Topic Of Interest (RTOI) Webinars

1. Overview of Secondary Condition Associated with Spina Bifida and Special Look into the Role of Assistive Technology

Date and Time: May 10, 2007, 3:30 pm EDT (12:30PDT)
Presenters: Andrea Hart, PhD (AR UCEDD); David Morrissey, MPS (AUCD Policy Fellow); Kurt Johnson PhD (WA UCEDD); Brian Dungeon, PhD (WA UCEDD)
Discussant:
Adriane K. Griffen, MPH, CHES (Spina Bifida Association)

Adolescents and young adults with spina bifida are at risk for secondary conditions such as obesity, social isolation, depression, and lack of independence. This webinar will share the results of two RTOI studies looking at the prevalence of secondary conditions in relation to race, ethnicity, and/or socioeconomic factors and the use of assistive technology in promoting health and reducing secondary conditions. Additionally, the researchers will present issues and challenges identified by youth and young adults with spina bifida in the studies as they transition from school to work, pediatric to adult health care, and home to independent living. Register for this free webinar.

2. Quality of Life of Persons with Tourette Syndrome

Date and Time: July 19, 2007, 3:30 pm EDT (12:30 pm PDT)
Presenters: Sam Zinner, MD & Tari Topolski, PhD (WA UCEDD)
Discussant: Tourette Syndrome Association

Tourette syndrome (TS) is commonly associated with challenges such as attention-deficit/hyperactivity, obsessive-compulsive behaviors, other associated behavior challenges and learning disabilities. These co-occurring conditions make the management of TS a complex matter for individuals and families. Quality of Life (QoL) domains such as sense of self, social relationships, culture, and community are important and primary determinants in the management of TS. In this webinar, RTOI researchers will present the results of their two-year study, which focuses on identifying factors that contribute to the quality of life of persons with TS, determine the need for effective screening instruments, and provide information on possible points of intervention. Additional information on this webinar will be posted on the AUCD website in early June.

Invitation to Participate on 2007 RTOI Peer Review Panel
AUCD is seeking members from the network who would like to become a peer reviewer for the 2007 RTOI applications in the two areas of Down syndrome/Health Education and Emergency Management. Individuals who are interested should send a detailed resume to Sue Lin Project Director of the AUCD-NCBDDD Cooperative Agreement, by April 20, 2007, 5:00 pm EDT. Please include a short cover letter describing your area of expertise. You must include your academic credentials, complete contact information, and a description of your experience in relevant areas.