November 2012

In this Issue

A Note from the
Director of NCBDDD
News from NCBDDD

NCBDDD Congratulates
Dr. Gloria Krahn

CDC Disaster Resources
for Hurricane
Sandy Response

Introducing the New
Preconception Health and
Health Care Resource Center!

CDC’s Clinician Outreach
and Communication
Activity Calls

Annual Report: NCBDDD
Requests Your Feedback

Parent Corner
News from our Partners

OAR Graduate Research
Grant Program

Second Edition of Bright
Futures Family Pocket
Guide Now Available

The Arc’s HealthMeet™
Launches Website

Framework Offered for
Measuring Community-
Based Wellness Efforts

It’s All in the Pump:Managing
and Treating Heart Failure
in the ACHD Patient

Upcoming
Conferences
& Events

CHADD Annual International Conference on ADHD
November 8-10, 2012
San Francisco, CA

2012 AUCD Annual Meeting
December 1-5, 2012
Washington, DC

Friends of NCBDDD Meeting
December 5, 2012
Washington, DC­­­­­­­

Upcoming Webinars

It’s All in the Pump: Managing
and Treating Heart Failure
in the ACHD Patient

Nov. 15, 7:00–8:00 pm ET

Time Out for Genetics:
Genetics Across the Lifespan – Putting It All Together
Nov. 29, 12:00-12:30 pm CT

Funding Opportunities

AAHD Scholarship Program
*Deadline: Nov. 15, 2012

OAR Graduate Research
Grant Program

*Deadline: Feb. 15, 2012

NCBDDD’s Social
Media Corner

Please join us!
November:
Social Media Events

Upcoming Twitter Chats!

Topic: Family Health History
Date: Tuesday, November 20
Time: 1:00 pm ET
Host: March of Dimes
Guest: Dr. Regina M. Benjamin,
US Surgeon General
How to Join: Follow the #PregnancyChat hashtag on Twitter

Topic: International Persons
with Disabilities Day
Date: Monday, December 3
Time: 3:00 pm ET
Host: NCBDDD’s Division of Human Development and Disability
How to Join: Follow the #IDPD hashtag on Twitter

Follow NCBDDD
Leadership on Twitter:

Dr. Coleen Boyle, NCBDDD Director: https://twitter.com/DrBoyleCDC

Dr. Althea Grant, Acting Director
of the Division of
Blood Disorders: https://twitter.com/DrGrantCDC

Dr. Scott Grosse, Research Economist in the Division of
Blood Disorders: https://twitter.com/DrGrosseCDC

Dr. Georgina Peacock, Developmental Pediatrician in
the Division of Birth Defects
and Developmental Disabilities: https://twitter.com/DrPeacockCDC

Susanna Visser, Epidemiologist
in the Division on Human
Development and Disability: https://twitter.com/VisserCDC

Quick Links

Friends of NCBDDD

 NCBDDD

 Join Friends of
NCBDDD Listserv

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A Note from the Director of NCBDDD

Dear Friends,

On Monday, October 29, the largest Atlantic tropical system on record made landfall just south of Atlantic City, New Jersey, bringing winds up to 90 mph, and pushing a massive storm surge onto beaches and shorelines. In its wake, people lost their lives, homes were destroyed, and thousands were forced to evacuate. Many remain without electricity where flooding has shattered infrastructure – and those affected are now trying to assess the damage. Citizens’ lives have been completely upended by Hurricane Sandy’s destruction.

President Obama has marshaled the resources of FEMA to assist during this crisis. Governors and mayors have also responded. Most uplifting is the growing list of agencies and partner organizations continuing to extend a helping hand. NCBDDD and the many organizations that make up the Friends are among those organizations standing on the forefront establishing disaster response connections, delivering resources, and providing financial support. So as we look forward to the End of Year Meeting, the theme, Making Connections, resonates well in this time of crisis. The outpouring of generosity to those in need, the continued willingness to be of service, and the partnership connections made during disasters, are what make our partnerships invaluable to the communities we serve. While I look forward to sharing NCBDDD’s key successes from 2012 during the meeting, I’m hopeful that we will also be able to informally share critical success stories from the work we are currently doing in response to the conditions along the eastern border.

We continue to extend our thoughts, comfort, and support to all those impacted by Hurricane Sandy.


Coleen A. Boyle, PhD, MS Hyg
Director, National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention

News from NCBDDD

NCBDDD Congratulates Dr. Gloria Krahn

NCBDDD would like to extend warm congratulations to Dr. Gloria Krahn for being named this year’s winner of the American Public Health Association Disability Section Lifetime Achievement Award. Dr. Krahn has made a major contribution to the improvement of health and quality of life for people with disabilities through research, teaching, and advocacy. With over 25 years of experience as an academic clinician, researcher, teacher and administrator, Dr. Krahn is widely regarded as a national and international expert in the field of disability and public health. Click here to learn more about Dr. Krahn’s achievement award.

CDC Disaster Resources for Hurricane Sandy Response

For daily updates and information about the Hurricane Sandy response, please visit:

As events evolve surrounding the hurricane response, we will continue to update partners on a regular basis through the partner listserv.

Introducing the New Preconception Health and Health Care Resource Center!

The Preconception Health and Health Care Resource Center (the Resource Center) is a comprehensive web directory of hyperlinks to tools and resources designed to advance the health of men and women of reproductive age.

Resource Center users should expect to:

  • Increase their awareness and knowledge of evidence-based preconception health and health care resources;
  • Identify examples of how to promote preconception health and health care, and integrate it into public health practice; and
  • Identify, address, and prevent risk factors that might affect future pregnancies.

With financial and programmatic support from the Centers for Disease Control and Prevention (CDC), the following national partners have collaboratively designed and populated this Resource Center: the Association of Maternal & Child Health Programs (AMCHP), the Association of State and Territorial Health Officials (ASTHO), CityMatCH, Johnson Group Consulting, Inc., the National Preconception Health and Health Care Initiative, the National Association of County and City Health Officials (NACCHO), and the Center for Maternal and Infant Health at the University of North Carolina, Chapel Hill. To learn move visit: http://www.cdc.gov/preconception/freematerials.html.

CDC’s Clinician Outreach and Communication Activity Calls

CDC hosts regular COCA (Clinician Outreach and Communication Activity) Calls to keep clinicians and partners informed on outbreak and other emerging issues. CDC hosted Meningitis outbreak calls on October 10 and October 16. The audio and transcripts from these calls are archived and can be found at: http://emergency.cdc.gov/coca/.

You are invited to join the next regularly scheduled COCA call on Thursday, November 15, with the Yale New Haven Center for Emergency Preparedness and Disaster. All of the COCA Call information (upcoming and past), plus outbreak investigation resources are available on the COCA website.

You can be added to the COCA listserv by sending an email to COCA@cdc.gov

and writing SUBSCRIBE in the subject line. You will then receive information on upcoming COCA Calls as well as other pertinent health information, including public health emergency messages.

Annual Report: NCBDDD Requests Your Feedback

NCBDDD invites you to provide your feedback and comments on the Annual Report. The Center is currently in the process of developing the 2012 Annual Report with new content and data, and elements to make the tool more user friendly. Your input is requested as part of this process. Please visit the Annual Report and prepare your thoughts and feedback on the appearance, organization, programmatic utility, and usefulness for your constituencies, and any other criteria you feel important. Send your comments to Ursula Phoenix Weir at uap3@cdc.gov.

Parent Corner

In November we celebrate Veterans Day, an important recognition for those who serve and sacrifice for our freedom. We at NCBDDD work to support those who return from war with newly acquired disabilities. The Amputee Coalition has been a strong supporter to our friends of NCBDDD and we appreciate their support and the important work they do on behalf of all persons with limb loss.

The Division for Human Development and Developmental Disabilities works to support health promotion programs that help individuals prevent and manage aspects of their health. We have identified the “Living Well with a Disability” initiative in a past article for Parent Corner as an evidence-based health promotion program that works with communities to provide appropriate health care delivery for persons with disabilities.

These individuals can manage various aspects of their health including nutrition, fitness, talking with providers, and managing stress. We want a successful transition into the health care community for all persons with disabilities but especially those with newly acquired disabling conditions.

As we approach this Veterans Day, let’s keep in mind how we, as community members, work to make these transitions successful for all.

Julie Beckett

News from our Partners

OAR Graduate Research Grant Program

The Organization for Autism Research (OAR) accepts proposals from students pursuing graduate level studies (master’s, doctorate, post-doctorate) in the United States and abroad. Interested applicants may apply online beginning October 1, 2012. OAR will accept applications until Friday, February 15, 2013. Through this competition, OAR intends to promote research in:

  • The analysis, evaluation, or comparison of assessment models, treatment models, or service systems,
  • Applied aspects of early intervention and/or school-based education, behavioral, or communication intervention,
  • Adult issues such as continuing education, employment, housing models and “later intervention,” or
  • Issues related to family support, social and community integration, and assessment and intervention with challenging behavior.

OAR seeks to fund studies that will likely produce practical and clearly objective results that can help parents, families, professionals, and people with autism make more fully informed choices, leading to healthier and happier lives. OAR will only make grant awards for studies to be conducted during the grant period from July 1, 2013 through ­ December 31, 2014. Interested students can find out more about the program and the online application system on the OAR website. For more information, contact Cody Waters, business manager, at 703-243-9717 or research@researchautism.org.

Second Edition of Bright Futures Family Pocket Guide Now Available

The 2nd Edition of the Bright Futures Family Pocket Guide is reorganized for greater ease of use, and has many updates and a great deal of new information.
This 164-page book was developed for families by families, in partnership with the American Academy of Pediatrics (AAP) and other professionals, and based on the AAP’s Bright Futures: Guidelines for the Health Supervision of Infants, Children, and Adolescents (3rd ed.).Bright Futures was recognized as the gold standard of pediatric care in the Affordable Care Act.

Developed for families by families, the Pocket Guide provides families with:

  • Information and encouragement for the roles families play every day in the health and well-being of their children
  • Information about the importance of well child visits for all children, including children and youth with special health care needs
  • Encouragement to speak up to take active roles in their children’s care
  • Encouragement to form partnerships with other families and with professionals to improve policies, care, services, and support for all children and families
  • An overall framework for children’s good health and insight into all those who contribute to it
  • Current, comprehensive, succinct information about child development
  • Links to resources and further sources of information for children’s good health

Health care professionals as well as parents are finding the Pocket Guide to be a valuable reference. Click here for more information and to order copies of the Pocket Guide.

The Arc’s HealthMeet™ Launches Website

The Arc’s HealthMeet™ project has recently launched a new website. HealthMeet™ will raise awareness of and reduce the significant health disparities often experienced by people with intellectual disabilities (ID), including those with autism. Five chapters of The Arc will hold free, community-based health screenings and health promotion activities for people with ID as well as online and in-person trainings for healthcare professionals, individuals with ID and their families/caregivers, direct service providers, and medical students. On the website, you can find more information about the project as well as view archived and upcoming webinars on a range of topics related to health promotion for people with ID. HealthMeet™ is a project of The Arc funded by a million dollar cooperative agreement with NCBDDD, Grant #1U59DD000993-0.

Framework Offered for Measuring Community-Based Wellness Efforts

An Institute of Medicine committee released a report describing a framework to estimate the value of community-based, nonclinical prevention policies and wellness strategies. The goal of the report, called An Integrated Framework for Assessing the Value of Community-Based Prevention, is to make it easier to prevent disease, increase behaviors that improve health and well-being, slow or stop the progress of disease, and decrease disparities, all at the population level, according to a summary of the report.

The committee recommends that community-based prevention and wellness strategies account for benefits and harms in physical and mental health, community well-being, and community process; consider the resources used, comparing the benefits and harms associated with those resources; and take into account differences among communities that can affect the link between interventions and outcomes.

Because eight existing frameworks did not include those features, the IOM committee produced its own, which is included in the 181-page report.

Upcoming Webinar

It’s All in the Pump: Managing and Treating Heart Failure in the ACHD Patient

As an ACHD patient, have you ever wondered what heart failure means? Do you know what symptoms to look for or what the treatment options are? Dr. Karen Stout, leading ACHD cardiologist, will answer these questions and help you understand which medications and devices are options for treating heart failure and advanced heart failure in adults with CHD. You won’t want to miss this Adult Congenital Heart Association webinar, on Thursday, November 15, 7:00 – 8:00 pm ET. Register today and learn how to live a productive life with heart failure.

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