AUCDigest

July 24, 2007 • Volume 7, Number 7

NEWS FROM AUCD NATIONAL OFFICE

AUCD-NCBDDD Cooperative Agreement Activities: RTOI Webinar Presentation on Tourette Syndrome Archived and Available. On July 19, 2007, Drs. Sam Zinner and Tari Topolski presented the results of their two-year RTOI study on the “Quality of Life Among Youth with Tourette Syndrome”. They were joined by Sue Levi-Pearl, Vice President of Medical & Scientific Programs, Tourette Syndrome Association (TSA) as the discussant. The preliminary results of the study indicated that:

• Youth with Tourette Syndrome experience a poorer quality of life than youth without chronic conditions
• The impact on families is significant
• There is a need for a Tourette Syndrome specific Quality of Life (QOL) measurement tool
  Presentation Materials are now archived on the AUCD website. Email Sue Lin, MS, Project Director, CDC Cooperative Agreement, with any questions.

Grab the Membership Spotlight! The AUCD website’s Member Spotlight is a monthly feature that profiles an AUCD Network member and highlights its recent activities and accomplishments. If you would like your UCEDD, LEND, or DDRC to be featured in an upcoming Member Spotlight, submit an idea for an article. Please include:

• A brief description of your program (1 paragraph)
• Highlights of a newsworthy activity or success story (2-3 paragraphs maximum)
• Your organization's logo in a high resolution format (200 dpi or higher)
• One or two pictures illustrating the article in a high resolution format (200 dpi or higher)
  We will let you know if your article has been selected for an upcoming Member Spotlight. See Member Spotlights!

Information Request: Autism, Adult Services, MR/DD Agency Survey. The Central Office is seeking information to provide a more comprehensive network picture in relation to 3 specific areas: Autism, Adult Services, and your work with state MR/DD agencies. If one respondent from each Center could complete a brief survey, the information would be serving the following purposes:

• Create a fact sheet on the type and breadth of the network’s autism activities to share with legislators and autism advocacy groups in the coming months as legislative and federal agency decisions are made;
• Compile a summary of the type and breadth of adult services the network engages in to (a) inform the network itself and (b) suggest areas that could be leveraged (c) to inform other disability organizations and Hill staff;
• Compile a description on the nature and extent of work that Centers are doing with their state MR/DD agencies to (a) inform the network itself and (b) to help build an exchange of information and possible collaborations with the National Association of State Directors of Developmental Disabilities Services and its individual state members.
  Please respond by Friday, August 3, 2007. If you cannot use Survey Monkey, please contact Dr. Maggie Nygren for an alternative format.

AUCD Health & Disability Digest – Summer 2007 Issue. News featured in this quarterly issue includes:

• Promoting Wellness for Persons with Disabilities – New AUCD Network Wellness Activities Publication, Compiled by David Morrissey, MPS, 2007 AUCD Policy Fellow
• Featured RTOI Project: Risk Factors for Late-Onset Hearing Loss in Children, RTOI 2004-01-05, PI: Richard Folsom, PhD
• American Association on Health and Disabilities (AAHD) launches Disability and Health Journal
• 2007 AUCD Annual Meeting & Conference - Tomorrow is Here Today: The Interrelationship of Research, Education, Service, and Policy
  November 10-14, 2007, Washington DC
  HDD is edited by Sue Lin, MS, Project Director, CDC Cooperative Agreement

< Previous | 2 of 11 | Next >