August 2011

News from the Executive Committee
Friends of NCBDDD Represented at Meeting with HHS Assistant Secretary for Health and HHS Director of Office on Disability

In April, 2011, HHS released its plan, “HHS Action Plan to Reduce Racial and Ethnic Health Disparities: A Nation Free of Disparities in Health and Health Care”.  The plan left out disabilities as a population.  As many of you are aware, the Affordable Care Act (ACA) mentions in detail the need to decrease disability health disparities, improve the quality of care for people with disabilities and collect additional health related data.  On Monday, July 18th, 2011, a group of disability representatives, including two members of the Friends of NCBDDD Executive Committee (Roberta Carlin and George Jesien) were invited to meet with Assistant Secretary for Health, Dr. Howard Koh, and HHS Director of the Office on Disability Henry Claypool to discuss the development of an action plan to end disability health disparities.  Allison Johnson represented NCBDDD leadership in the meeting.  At the meeting, Dr. Koh confirmed his commitment to an action plan to end disabilities disparities and the disability representatives provided input into what should be in the action report, including the extensive existing data that shows the disparities facing people with disabilities.  NCBDDD staff is working very closely with the Assistant Secretary’s  staff and Office of Disability staff to produce this document.  This Action Report is an important step for the administration to make ACA a reality for people with disabilities and work to improve the health care and health outcomes people with disabilities experience.

News from NCBDDD
NCBDDD Partner Open House

NCBDDD hosted an open house on Thursday, August 11, at their offices in Atlanta, Georgia. Over 60 partner organizations participated in the day-long event and initial feedback has been very positive. Highlights of the day included opening remarks by NCBDDD leadership spotlighting the many accomplishments made by the Center during the past 10 years, “open house” discussions hosted by each Division, and a presentation by the CDC Foundation on how they help support CDC’s mission. In addition, a “listening session” was held in the afternoon where partners were able to provide additional feedback on NCBDDD’s revised transition plan for implementing the proposed budget consolidation.

NCBDDD Connects with the Community

On August 24, NCBDDD and the Colorado Department of Public Health and Environment will host a forum, “NCBDDD Connects with the Community,” in Denver, Colorado. During this meeting, the Center will showcase the work of several grantees and partners, including the Early Hearing Detection and Intervention (EDHI) program and Colorado-based projects that link data to programs resulting in birth defects prevention and health promotion. During this time, NCBDDD will learn about Colorado’s programs and seek audience advice and recommendations on NCBDDD’s new strategic plan. 

Congenital Hearts Defects Briefing

Senator Durbin will be hosting a congenital hearts defects briefing on September 19, 2-3 pm, at the U.S. Capitol Visitor Center. Additional information about the briefing can be obtained by contacting Alison Perencevich (American Academy of Pediatrics) at or 202-347-8600.

Sickle Cell Disease Field Event

NCBDDD and the Sickle Cell Disease Association of America (SCDAA) will be hosting an event, “Closing the Survival Gap: The Role of Public Health in Sickle Cell Disease” on Friday, September 30, 5-7 pm, as part of the SCDAA’s annual convention in Memphis, Tennessee. The event will provide an opportunity for NCBDDD and other public health officials, community leaders, and advocates, highlight the progress that has been made to date and the important work that is still needed to address this disorder.

NCBDDD Budget Information Added to Website

NCBDDD has added a section to their “About Us” section on the NCBDDD webpage that provides useful budget reference tables and narratives for the Center. This information can be accessed at:

CDC Public Health Grand Rounds “Newborn Screening: Improving Outcomes”

On August 18, CDC hosted a webcast on newborn screening as part of its monthly Public Health Grand Rounds series. This session focused on addressing the laboratory and data collection challenges associated with newborn screening and a discussion on effective strategies to meet the promise that newborn screening holds for all children.  Presenters included Dr. Rodney Howell (Chair of the Secretary’s Advisory Committee on Heritable Diseases in Newborns and Children), Sharon Terry (Genetic Alliance) Dr. Carla Cuthbert (CDC/National Center for Environmental Health), Dr. Scott Grosse (CDC/NCBDDD), and Dr. Vera (Fan) Tait (AAP). An archived broadcast can be accessed at:

News from the Friends of NCBDDD Advocacy Coalition
Randy Fenninger Joins Advocacy Coalition Leadership

Randy Fenninger, President of the National Blood Clot Alliance, has agreed to serve as vice chair and blood disorders representative for the Friends of NCBDDD Advocacy Coalition. View revised leadership.

Friends Advocacy Coalition Shares Revised FY 2012 Appropriations Statement

The Friends Advocacy Coalition has shared its revised FY 2012 appropriations statement on the Friends of NCBDDD website.  Please note the suggested six CDC obligations when considering program consolidations. View statement.

Friends Advocacy Coalition Meets with OMB

On August 8, 18 members of the Friends of NCBDDD advocacy coalition met with the Public Health Division, Office of Management and Budget, to discuss ensuring adequate funding and maintaining the integrity of NCBDDD during these challenging times.

News from our Partners
CDC Director Thomas R. Frieden to Speak at Vascular Disease Foundation Annual Meeting

Thomas R. Frieden, MD, MPH, Director, Centers for Disease Control and Prevention will be the keynote speaker at the Vascular Disease Foundation’s (VDF) annual meeting, “Current Issues in Vascular Disease” September 14-15 in McLean, VA.  A group of nationally recognized experts from VDF will be engaging in discussions on the hottest topics in vascular disease with a particular focus in the areas of peripheral arterial disease (PAD), both acute and chronic venous disease, and how to make a difference for patients in one’s community.  Dr. Frieden will be speaking on smoking cessation and the public health issue of smoking on September 15th. In addition to Dr. Frieden’s presentation, Dr. Jeffrey Wigand will also be presenting on the same topic. Wigand is the tobacco industry whistleblower who helped the U.S. government in its tobacco settlement case. He was featured on a story on “60 Minutes” and as the character depicted by Russell Crowe in the movie “The Insider.” More information.

AUCD 2011: The Journey Continues

The Association of University Centers on Disabilities (AUCD) will host its 2011 Annual Meeting November 6-9 in Crystal City, VA.  Register now and join over 600 leaders in the disability field as we to reflect on the accomplishments of the last forty years, to face the challenges of today, and to imagine the future.  Many exciting events are in store for this year’s conference, including engaging and exciting speakers, a poster session featuring the newest research in developmental disabilities, an exciting Gala with live entertainment, morning fitness events, a DC sightseeing tour, and more.  For registration, hotel, and program information please visit AUCD 2011

NACCHO Tip Sheet: Tips and Strategies for Successful Integration of People with Disabilities into Local Public Health Promotion Programs

The National Association of County and City Health Officials (NACCHO) with support from the NCBDDD, supported local health departments (LHDs) in a demonstration and technical assistance site project between 2005 and 2008. The sites focused on providing accessible and integrated health promotion for people with disabilities. Drawing on the experiences of the participating LHDs, NACCHO has compiled a tip sheet entitled, “Tips and Strategies for Successful Integration of People with Disabilities into Local Public Health Promotion Programs.” LHDs can use this document to improve upon already successful public health programs by strategically improving integration of people with disabilities. For more information contact NACCHO’s Health and Disability project at or (202) 595-1122.

Immunization Resource for Providers and Parents

The National Association of Pediatric Nurse Practitioners (NAPNAP) has developed a provider/consumer web based video vignette program related to immunization for infants and young children.  The short video vignettes (1 – 2 minutes) answer the frequently asked questions that parents have about immunization.  The program is complimentary.
More Information.

Partner Conferences
National Environmental Public Health Tracking Conference
September 12-15, 2011
Atlanta, Georgia

Place, Race, and Poverty: Strong Predictors of Birth Outcomes
September 30, 2011
Nashville, Tennessee
For more information contact Carol Hopkins (615-340-5614).

Thrombosis & Hemostasis Summit of North America
May 3-5, 2012
Chicago, Illinois

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