Folic Acid Awareness, Special Olympics, Genetics, Other News

Acting CDC Director Dr. Richard Besser is attending the Special Olympics Winter Games in Boise, ID this week, February 7-13th. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) partners with Special Olympics through the Healthy Athletes program to identify health challenges and disparities faced by Special Olympics athletes and other people with intellectual disabilities. NCBDDD supports the national and international efforts of Special Olympics to provide health screenings to athletes with intellectual disabilities through the partnership. For more about Special Olympics and the 2009 Winter Games in Boise, visit www.specialolympics.org.

The EPG executive committee has developed a fact sheet identifying a coherent strategy for increasing overall funding for NCBDDD for four specific priority areas. We request that all EPG partner organizations include this document ( available online here, under “FY2010 Budget and Appropriations” ) in their advocacy materials when making Capitol Hill visits or working with Congressional staffers. These priorities are more global in nature, and while each organization will pursue its own initiatives, we hope that by working together we can garner additional resources to promote NCBDDD’s work. Clarke Ross, Carolyn Mullen, and George Jesien can provide additional information, and as always, I’ll be happy to follow up on any questions or issues you might have.

- Russell Kirby, EPG Chair

March of Dimes has released the latest information from their 2008 Gallup survey of women and their knowledge and use of folic acid. Among the most notable findings: In 2008, 84% of women ages 18-45 reported having heard of folic acid, and 39% of women in the same age group reported taking a vitamin containing folic acid daily. Some 20% of these women aware of folic acid mentioned that folic acid prevents birth defects, and 11% mentioned that folic acid should be taken before pregnancy. For more information and detailed data, click here.

March 25-29, the American College of Medical Genetics (ACMG) will hold its 2009 Clinical Genetics Meeting in Tampa, FL. This gathering of the movers and shakers in the clinical genetics field will include educational sessions on topics including x-linked mental retardation genes and syndromes, follow-ups of anomalies detected during prenatal ultrasound, metabolic and molecular mechanisms of disease, direct-to-consumer genetics and personalized medicine, ethical controversies in the genetic screening of minors, and many others. For detailed meeting information or to register, go to www.acmgmeeting.net.

The newly established Carolina Institute for Developmental Disabilities (CI) provides cutting-edge services, research and training to benefit individuals with developmental disabilities and their families. And they are reaching out to partners, friends and supporters with a new newsletter. The Carolina Institute combines four nationally-recognized programs within the UNC School of Medicine—the TEACCH Program, the Center for Development and Learning (CDL), Family Support Network (FSN) and the Neurodevelopmental Disorders Research Center. For more information or to subscribe, send email to info@cidd.unc.edu.

Yale University will host the Global Health and Innovation Summit, an annual conference presented by Unite for Sight, Saturday, April 18 through Sunday, April 19, 2009 in New Haven, CT. The event includes 200 speakers and some 2,500 attendees from all 50 states and around the world, representing public health, public service, advocacy, science, nonprofits, human rights, universities, law, physicians, and many others. For more information and to register, go to www.uniteforsight.org/conference.

The Disability and Health Journal (DHJ), launched in January 2008, is the official journal of the American Association on Health and Disability (AAHD). The DHJ is a scientific, scholarly, peer reviewed and multidisciplinary journal whose hard-copy format is part of membership in AAHD, included in the membership fee. To learn more about submissions guidelines and the editorial board, and to read abstracts from the January 2009 issue, visit www.disabilityandhealthjnl.com. For membership information in AAHD, click here. You may also contact Roberta Carlin for more information, at 301-545-6140 ext. 206 or rcarlin@aahd.us.

In an unusual move, the Internal Revenue Service (IRS) has lowered its standard mileage-reimbursement rate. Effective January 1, 2009 the mileage rate is 55 cents per mile for all business miles driven, down from the rate of 58.5 cents a mile that was in effect in the second half of 2008. The mileage-reimbursement rate for 2009 is now 24 cents per mile driven for medical or moving purposes and 14 cents per mile driven in service of charitable organizations. For complete details from the IRS, click here.