- A Note from the Executive Committee: Keeping NCBDDD Programs, Disability Issues in the Policy Spotlight
The EPG executive committee continues to monitor activities concerning federal legislation and appropriations related to NCBDDD and its programs. We have been working to assure that as Congress begins to consider the issue of health disparities, disabilities and health are also a focus of the policy debates. We encourage member organizations to utliize the briefing materials on EPG budget priorities for NCBDDD when working with members of Congress and their staff, and to bring any new issues related to broad NCBDDD priorities to our attention. As always, feel free to contact me at rkirby@health.usf.edu.
Russell Kirby, PhD
EPG Executive Committee Chair
- A Note from Our Friends at NCBDDD: Responding to the H1N1 Flu Outbreak
CDC continues to take aggressive action to respond to an expanding outbreak caused by novel H1N1 flu. CDC continues to issue and update interim guidance daily in response to the rapidly evolving situation. Please visit www.cdc.gov/h1n1flu for the latest information.
- CDC’s New Products on Fetal Alcohol Spectrum Disorders
CDC has introduced several new products that guide in the identification, prevention and management of fetal alcohol spectrum disorders (FASDs). Among the materials is a curriculum development guide for use with medical and allied health students and practitioners. Also included are two reports from the National Task Force on Fetal Alcohol Syndrome and Fetal Alcohol Effect with recommendations on promoting and improving effective prevention strategies to reduce alcohol use and alcohol-exposed pregnancies, and on improving and expanding early identification, diagnostic services and quality research efforts. Prenatal alcohol exposure is one of the leading preventable causes of birth defects and developmental disabilities. For more information about these CDC products, go to www.cdc.gov/fasd.
- Author-Activist Quinn Bradlee Inspires New Dialogue on Learning Disabilities
A new memoir from Quinn Bradlee is drawing national attention to learning disabilities (LD). Bradlee, author of A Different Life: Growing Up Learning Disabled & Other Adventures, writes about living with LD and is using his platform to raise awareness and to advance the public dialogue about LD and other disabilities. Through recent appearances, including an interview on ABC’s “Good Morning America,” the Washington, DC resident and HealthCentral staffer is sharing his message of overcoming disabilities through humor. And his website is fast becoming a popular resource and networking hub for the LD community. To learn more, visit www.friendsofquinn.com.
- “Period of Purple Crying” Program Prevents Shaken Baby Syndrome
Approximately 1,300 American infants are hospitalized or die from shaken baby syndrome each year. Eighty percent of the children who survive suffer brain injury, fractures, paralysis, blindness, deafness and other disabilities. But new research shows that education is an effective tool for preventing shaken baby syndrome. To learn more about the “Period of Purple Crying” program developed by the National Center on Shaken Baby Syndrome, go to www.dontshake.org. And for an abstract from the March 2009 issue of the journal Pediatrics, which looks at the program’s impact on a cohort of over 2,700 mothers of newborns, click here.
- New Web Resource from the Spina Bifida Association
The Spina Bifida Association (SBA) has developed a new online Resource Directory highlighting many of the topics handled by the National Resource Center. The new directory’s top 10 topics include: Prenatal issues, Everyday transportation and travel, Camps, Financial need, Bowel and bladder needs and care, Orthopedic needs and care, Neurologic needs and care, skin health, learning and education, and living in the community. The information contained in these resources is periodically reviewed and updated. To check out the new Resource Directory, visit SBA’s homepage at www.spinabifidaassociation.org. To recommend a resource or an update, send email to sbaa@sbaa.org.
- Study: Dentists Crucial to Diagnosing & Treating Sleep-Disordered Breathing in Children with Down Syndrome
A new study finds that dentists play a crucial role in recognizing and treating sleep-disordered breathing problems in children with Down syndrome. The report, published in the March 2009 issue of the Journal of the American Dental Association, finds that although sleep-disordered breathing occurs in 50 to 80 percent of children with Down syndrome, it is often slow to be recognized, diagnosed and effectively treated. The study’s authors recommend that oral health professionals recognize the impact of sleep impairment and the need for diagnostic testing, and that they collaborate with a physician who is a sleep specialist and with a child’s primary physician when evaluating and selecting the most effective treatment for children who have Down syndrome and sleep-disordered breathing. For the abstract, click here.
- Arc of the United States Seeks Development Associate
The Arc of the United States, the nation’s oldest and largest organization serving children and adults with intellectual and developmental disabilities, is accepting applicants for the position of Development Associate in its Maryland office. The individual in this position is responsible for gift processing in Raiser’s Edge, including communications follow-up, assisting with the direct response program and development reporting, security exhibitors for convention, conducting research, and supporting direct mail and other fundraising projects and donor relations activities. The position requires three to five years of fundraising experience. For more details, click here.
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