November 2011

A Note from the Director of NCBDDD

Greetings!
It is my great pleasure to have this opportunity to share reflections with the Friends of NCBDDD on the work of the Center.  It’s been a privilege to have my first year as Director of NCBDDD to coincide with events that have been very purposefully tied to our connection with partners.  This journey has allowed me to gain new perspective on the impact of the work of NCBDDD and the continued importance of collaboration.  This perspective has made it clear to me that our collective work has successfully reframed the context for people that our Center serves and change how the world views many of our conditions and disorders for which the Center focuses.

To honor a decade of progress and to showcase our work, we embarked on a mission to carry out a series of events and activities throughout the year focusing on milestones, advancements, and future possibilities in the fields of birth defects, disabilities, and blood disorders.  Events throughout the year included:

•Healthy Beginnings: Congressional Hill Kickoff (Washington, DC)
•Autism Spectrum Disorders: Understanding an Urgent Public Health
 Concern (New Brunswick, NJ)
•NCBDDD Partner Open House (Atlanta, GA)
•NCBDDD Connects with the Community – Field Event (Denver, CO)
•Congenital Heart Defects Congressional Briefing (Washington, DC)
•Closing the Survival Gap: The Role of Public Health in Sickle Cell Disease –
   Field Event (Memphis, TN)

The culminating, celebratory event for the year-long commemoration was held on the evening of November 1 in Washington, D.C.  Many of you were in attendance and we greatly thank you for your attendance.  The event was opportunity for the Center to express gratitude and appreciation to our partners and to create an experience that moves individuals into action.  From artful expressions and inspiring video presentations, to compelling storytelling and visual reflections – the Center’s priorities were highlighted thru a variety of sensory experiences.

It was wonderful to witness how well attended the event was by numerous partner organizations, federal agencies, and a plethora of NCBDDD supporters.  We hope to maintain the momentum from the event and will be reaching out to you soon to gather creative inputs into future activities that embrace the continued spirit of engagement.  You all have been a part of this remarkable progress spanning 10 years and while I know we have not arrived at our destination, there is no doubt in my mind that we can all be proud of our accomplishments in changing this conversation.

Thank you for your leadership in this reframing, and thank you for making every effort to continue to keep the fields of birth defects, disabilities and blood disorders on the forefront.

Coleen
Coleen A. Boyle, PhD, MS Hyg

Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

News from the Advocacy Coalition

CDC Issues Statement on Proposed NCBDDD Disability Program Consolidation
On November 4, CDC issued a statement on the proposed NCBDDD disability program consolidation. In response to the U.S. Senate Committee on Appropriations “rejection” of the proposal, the CDC statement read: “In the absence of explicit Congressional support, CDC will not move forward with the proposed consolidation of budget lines.”

The complete statement is available from Clarke Ross, Friends of NCBDDD advocacy coalition at clarkeross10@comcast.net.

Friends of NCBDDD and Friends of NCBDDD Advocacy Coalition Meet with CDC Leadership
On November 7, the leadership of the Friends of NCBDDD and Friends of NCBDDD advocacy coalition met with the CDC leadership.  Participants were: Emil Wigode, Friends Advocacy Coalition Vice Chair for Birth Defects; Randy Fenninger, Friends Advocacy Coalition Vice Chair for Blood Disorders; Clarke Ross, Friends Advocacy Coalition Chair and Vice Chair for Disability; Roberta Carlin, Friends chair; Joe Canose, Friends Vice chair; CDC COO Sherri Berger; CDC Deputy Director Dr. Robin Ikeda; and CDC Washington, DC Office Director Ed Hunter.  This was the response to the Friends Advocacy Coalition request to meet with Dr. Frieden. A summary of the meeting was shared with the Friends advocacy coalition and Friends executive committee.

A major topic of the meeting was CDC’s need to precisely and effectively define the public health mission of each NCBDDD program. The advocates responded by citing the Coalition for Health Funding, relying on CDC definitions, definition of public health: “Public health is the science and art of preventing disease, promoting physical and behavioral wellness, supporting personal responsibility, and prolonging life in communities where people live, work, and learn.” Each participant gave examples. The Friends leadership is working on a paper to more effectively define this response.

News from our Partners

HRSA Issues 2011 Report on the Health Status, Health Behaviors and Use of Health Care by US Women
The Health Resources and Services Administration’s (HRSA) Women’s Health USA 2011, the tenth edition of an annual data book identifying priorities, trends and disparities in women’s health, is now available.  The 2011 edition highlights several new topics, including secondhand tobacco smoke exposure, Alzheimer’s disease, preconception health, unintended pregnancy, oral health care utilization and barriers to health care.   For the first time, the special population section of the report features data on the health of lesbian and bisexual women, as well as Native Hawaiian and other Pacific Islander women. Data on American Indian and Alaska Native women are also featured. The data indicate that historically underserved sub-populations of women are at increased risk for multiple negative health outcomes. Preventive care, increased access to vital health services, supports and resources can promote the health and well-being of all women.

Women’s Health USA 2011 is available in print and online at http://www.mchb.hrsa.gov/whusa11/ and  online version now includes individually downloadable data tables and corresponding figures.  Print copies can be ordered through the HRSA Information Center toll-free at 1-888-ASK-HRSA or online at www.ask.hrsa.gov. For more information about women’s health visit www.hrsa.gov/womenshealth and for more information about maternal and child health is available at www.mchb.hrsa.gov/researchdata.

March of Dimes invites you to a Congressional Briefing: Preventing Prematurity-Progress and Pitfalls
Wednesday, November 30, 2011
12:00 – 1:30 p.m.
Capitol Visitors Center HVC – 201 (Lunch will be provided)
To RSVP, please email: mputman@marchofdimes.com

The nation received a “C” grade on the March of Dimes  annual Premature Birth Report Card, which was released on Tuesday. The report card graded states by comparing each state’s rate of premature birth to the March of Dimes 2020 goal of 9.6 percent. The current nationwide rate is 12.2 percent. A link to the report card and can be found here.

2012 U.S. Olympic Committee Paralympic Leadership Conference Save the Date
Join us for the fifth annual U.S. Olympic Committee Paralympic Leadership Conference and learn alongside other leaders like you, in workshops led by top professionals in the Paralympic movement from across the country. The conference will be held April 27-30, 2012 at the U.S. Olympic Training Center in Colorado Springs, Colo.  Proposals for conference sessions are also being accepted now through November 28, 2011. For more information, visit www.USParalympics.org/LeadershipConference.

SIDS Risk Reduction Course Offering NAPNAP Contact Hours on NAPNAP’s PNPSourCE Has Returned
This SIDS Risk Reduction course is designed to inform pediatric, obstetric, and neonatal nurses—as well as all nurses who educate family members and caregivers about caring for infants—of the latest risk reduction strategies for SIDS. It is also designed to increase nurses’ knowledge of ways to communicate SIDS risk reduction information to parents and caregivers.  The course is free and offers 1.0 NAPNAP contact hours.  Visit PNPSourCE at www.napnapce.org today.

Featured Webinar

CDC’s Life Course Model for Children and Young Adults with Chronic Conditions

Tuesday, November 29
4:00 pm to 5:00 pm EST

This webinar, co sponsored by AAIDD and AAHD, will focus on CDC’s Life Course Model and public health approach for rare and complex disabling conditions such as Fragile X syndrome, muscular dystrophy and spina bifida. Panelists will provide an overview of childhood-onset conditions, discuss current approaches to data collection and describe how CDC incorporates a life course approach into its work.

Panelists include:
Mark Swanson, MD, MPH, Senior   Medical Advisor, Division of Human Development and Disability, Centers for Disease Control  and Prevention
Julie Bolen, PhD, MPH,   National Center for Chronic Disease Prevention and Health Promotion, Centers   for Disease Control and Prevention

Featured Conference

Early Hearing Detection and Intervention Meeting

March 5-6
St. Louis, MO

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