September 2011

News from NCBDDD

Congenital Heart Defects Congressional Briefing

Senators Richard Durbin and Thad Cochran will be hosting a Congressional briefing, “Congenital Heart Defects: A Lifelong Disease,” on September 19, 2-3 pm, in Room 212-10 SVC in the Capitol Visitor Center. The briefing will highlight the increasing public health impact of congenital heart defects across the lifespan and understanding the important role of federal and state programs in congenital heart defects research, surveillance, screening and prevention. Featured speakers include Dr. Coleen Boyle, National Center on Birth Defects and Developmental Disabilities;  Dr. Marion Burton, American Academy of Pediatrics; Amy Verstappen, Adult Congenital Heart Association; Dr. Gideon Mecum, Arkansas Children’s Hospital; Dr. Matthew Oster, Emory University of Medicine; and Dr. Geoffrey Rosenthal, University of Maryland School of Medicine. 

Sickle Cell Disease Field Event

As part of the 10 Years of Service celebrations, The Sickle Cell Disease Association of America (SCDAA) and the National Center on Birth Defects and Developmental Disabilities (NCBDDD) will be hosting a program, “Closing the Survival Gap: The Role of Public Health in Sickle Cell Disease,” on September 30, 2:45-4:15 pm, in Memphis, Tennessee, as part of the SCDAA’s 39th Annual Convention. The program will focus on highlighting federal, state, and local programs in sickle cell disease research, surveillance, screening and prevention. Featured speakers include Dr. Garth Graham, HHS Office of Minority Health; Dr. Coleen Boyle, NCBDDD; Dr. Michael DeBaun, Vanderbilt School of Medicine; Dr. Althea Grant, NCBDDD; Trevor Thompson, Sickle Cell Disease Foundation of Tennessee; and Sonja Banks, SCDAA. Also invited are Representatives Steve Cohen and Marsha Blackburn and Yvonne Madlock, Memphis and Shelby County Health Department. 

CDC Disability and Health Work Group Progress Report

On September 14, Dr. Vince Campbell, CDC’s Chief Disability Officer, briefed the Disability and Rehabilitation Research Coalition on progress made by the CDC’s Disability and Health Work Group since its establishment in May 2010. Key accomplishments mentioned were the inclusion of people with disabilities in the first-ever CDC Health Disparities and Inequalities Report (MMWR, January 14, 2011), release of a Vital Signs and MMWR QuickStats on unmet health care needs (November 2010), and development of a logic model for disability inclusion activities at CDC.


News from our Partners
National Down Syndrome Congress Recognizes National Down Syndrome Awareness Month Through “Just Dance” Program

The National Down Syndrome Congress (NDSC) is out to erase the final traces of the myths and the misconceptions about people with Down syndrome. Under the banner, We’re More Alike Than Different, we are demonstrating that people with Down syndrome are just like all of us, with the same hopes and dreams, accomplishments and challenges. The lives of people with Down syndrome are of value — in fact, priceless. You can help NDSC spread this message through our new, exciting awareness event! Bring awareness of Down syndrome to your community! Host a Just Dance! Event. It’s easy and can be done by anyone, anywhere, anytime.  Spotlighting the similarities and capabilities of people with Down syndrome, while having awesome fun, is the centerpiece of the dance. The added bonus? Raising funds to help people with Down syndrome lead full, purposeful lives. The National Down Syndrome Congress can help you with all the details of planning this unique opportunity. Get ready to bust a move! For more information email  or visit

Philanthropedia Ranks Special Olympics A Top Non-Profit Organization

In August, Philanthropedia ranked Special Olympics the top non-profit organization serving people with disabilities. Philanthropedia is a subsidiary of GuideStar, which encourages charitable giving by promoting financial responsibility and transparency among non-profit organizations.  Special Olympics was considered along with 11 U.S. organizations serving people with disabilities by 79 disability experts including non-profit senior staff, researchers and faculty, and foundation professionals, all of whom average 20 years of experience in his or her respective fields.  These experts recommended organizations based on their impact on the field of disability and included organizations that support people with developmental, hearing, visual, physical and intellectual disabilities.

In the review, one expert commented, “Special Olympics International (SOI) was out front in breaking stereotypes about people with disabilities, especially developmental disabilities. SOI showed parents as well as the general public that the people with disabilities could be involved in sports and recreation, function as members of teams and live full lives.”  Special Olympics was also recognized for its strengths in leadership marketing, as well as for a dedicated network of volunteers and organizational reach.  As the Special Olympics Movement continues to mobilize around a central strategy of expanding the quality of sports training and competition for athletes with intellectual disabilities, building supportive communities of inclusion and acceptance for people with intellectual disabilities, and growing its global fan base, these rankings reinforce the importance of people with disabilities as leaders, advocates, and spokespeople.  Visit for more information.

Association of University Centers on Disabilities (AUCD) Change of Address

Please update your contacts!  Effective Monday October 3, 2011 AUCD will have a new address across the street from its current location in Silver Spring, Maryland:

Association of University Centers on Disabilities
1100 Wayne Avenue, Suite 1000
Silver Spring, Maryland 20910

Please note that telephone and fax numbers as well as email addresses will remain the same.  Should you have any questions do not hesitate to contact Danielle Webber.

American Academy of Audiology Promotes National Audiology Awareness and National Protect Your Hearing Month

The American Academy of Audiology is dedicated to advancing the profession through increasing public awareness of audiology and the importance of hearing protection. Grassroots efforts to educate the public locally will make a profound difference.  The Academy had several tools and resources available online to promote National Audiology Awareness Month and National Protect Your Hearing Month including bookmarks, factsheets, posters, PowerPoint presentations, press releases, and radio PSA’s. Resources:

Pediatric Cardiology for Primary Care Course Offering NAPNAP Contact Hours on PNPSourCE 

Evaluating and caring for children who present with murmurs and cardiac defects can be a daunting task. This course will help participants learn how to differentiate innocent versus pathologic murmurs using case studies and audio of heart sounds, review common cardiac defects and acquired disease, become more comfortable with how to manage this population in the outpatient setting, and know when it’s time to refer.  It offers 1.0 NAPNAP contact hour.  Visit PNPSourCE at to learn more.

American Association on Health and Disability (AAHD) Launches New Publication, 2011-2012 Scholarships

AAHD Launches New Publication Entitled “Disability and Public Health in the Media”

AAHD has launched a new weekly electronic newsletter entitled, Disability and Public Health in the Media.  You may view archived issues at  The weekly issue highlights articles related to disability and public health  that have been portrayed in the media over the last week.  To receive this free newsletter, please email   

AAHD Academic 2011-2012 Scholarships Available

Academic scholarships are available for students with disabilities majoring in a field related to disability. Funds are limited and scholarships will be competitive. Scholarships will be limited to under $1,000. The AAHD Board of Directors Scholarship Committee will evaluate each of the applicants and make a decision in December of each calendar year. The 2011 AAHD Scholarship Award will be awarded January, 2012.   Please circulate this announcement to your constituents and colleagues.  The application and criteria are available at under Scholarships.

Partner Conferences
American Music Therapy Association 2011 Annual Conference: Advocacy, Therapy, Leadership

November 15 – 20, 2011
Atlanta, Georgia

2012 National Down Syndrome Congress Convention

July 20 – 22, 2012
Washington, DC

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