February 2016

♦ News from NCBDDD Executive Committee

♦ Saving Babies

♦ Helping Children

♦ Protecting People

♦ Improving Health

♦ News from NCBDDD

♦ Connect with Us

♦ Submit Here

News from NCBDDD Executive Committee
NCBDDD Partner Briefing

Monday, February 22, 2016, 11:00 a.m. – 12:00 p.m. ET

register here


  • 11:00 a.m. Budget Briefing on NCBDDD FY17
  • 11:30 a.m. Zika Briefing

Presenter: Dr. Coleen Boyle, NCBDDD Director

NCBDDD ChairColeen Boyle serves as Director of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at CDC. Dr. Boyle joined NCBDDD’s Division of Birth Defects and Developmental Disabilities in 1988, first as Section Chief and later as Branch Chief and Division Director. In 2001, Dr. Boyle was named the Associate Director for Science and Public Health for CDC’s newly created National Center on Birth Defects and Developmental Disabilities (NCBDDD). In October 2004, she was appointed the Director of the Division of Birth Defects and Developmental Disabilities.

Webinar Handouts:

Please Note:

  • There is NO cost for this webinar.
  • CEUs are not offered for this webinar.
  • For disability accommodations email Anna Costalas or call 301-588-8252 a minimum of five days in advance.
  • This webinar will be archived.


Join the Communications Committee!

The Friends of NCBDDD Communications Committee invites you to join us in planning a communication strategy for 2016. The strategies will focus on identified priorities within the four thematic areas.  Proposed communications strategies for 2016 include:

  • A public health calendar to highlight events related to the four thematic areas
  • An awareness initiative to highlight the work of programs funded by NCBDDD, and a template for sharing stories
  • A LinkedIn group for members

If you would like to join the Communications Committee or would like more information contact Shannon Haworth, Friends if NCBDDD Executive Committee, Communications Chair.

The communications committee will meet quarterly. The next meeting will take place in March 2016. If you would like to attend please participate in this Doodle Poll by 2/19 to help the committee select a date for the next meeting.


Saving Babies
2016 Zika Virus Response
HHS_CDC_LogoUpdate: Interim Guidelines for Health Care Providers Caring for Pregnant Women and Women of Reproductive Age with Possible Zika Virus Exposure — United States, 2016

CDC has updated its interim guidelines for U.S. health care providers caring for pregnant women during a Zika virus outbreak. Updated guidelines include a new recommendation to offer serologic testing to asymptomatic pregnant women (women who do not report clinical illness consistent with Zika virus disease) who have traveled to areas with ongoing Zika virus transmission. Testing can be offered 2–12 weeks after pregnant women return from travel. This update also expands guidance to women who reside in areas with ongoing Zika virus transmission, and includes recommendations for screening, testing, and management of pregnant women and recommendations for counseling women of reproductive age (15–44 years). These interim guidelines will be updated as more information becomes available. Read more…

Interim Guidelines for the Evaluation and Testing of Infants with Possible Congenital Zika Virus Infection

CDC has developed interim guidelines for healthcare providers in the United States caring for infants whose mothers traveled to or resided in an area with Zika virus transmission during pregnancy. Healthcare providers caring for infants should work closely with providers caring for pregnant women to identify infants whose mothers may have been exposed to Zika virus during pregnancy. These guidelines include recommendations for the evaluation, testing, and management of infants with possible congenital Zika Virus infection. These interim guidelines will be updated as more information becomes available. Read more…

Interim Guidelines for Prevention of Sexual Transmission of Zika Virus — United States, 2016

CDC has developed interim guidelines for the prevention of sexual transmission of Zika virus. These guidelines apply to men who reside in or have traveled to areas with active Zika virus transmission (http://wwwnc.cdc.gov/travel/notices/) and their sex partners and will be revised as more information becomes available.

Learn how Zika virus is transmitted, how to avoid Zika virus disease, and more. Please check the CDC travel advisory website frequently for the most up-to-date recommendations:  http://wwwnc.cdc.gov/travel/page/zika-travel-information. Read more…

World Birth Defects Day is March 3, 2016

world birth defects day.pngWhat can you do to help?

  • Lend your voice to raise awareness! Register with your social media account and Thunderclap will post a 1 time message for you on March 3rd
  • Join the buzzday on Twitter, March 3, 2016 using the hashtag #worldbdday. We want to see you there. Plan to send one or more messages using the #WorldBDDay tag at some point during the day. Please retweet both promotional and day-of messages to build our buzz for the day. Remember to include the #WorldBDDay tag in all messages that you/your organization posts on this topic
  • Look for our CDC Feature on World Birth Defects Day
Protecting People
Public Health Webinars Series On Blood Disorders:
Impact of Public Health Surveillance on Hemophilia Care

impact.jpgFebruary 18, 2016, 2:00 p.m. – 3:00 p.m. ET

The Division of Blood Disorders (DBD) is proud to offer its “Public Health Webinar Series on Blood Disorders.” This webinar series provides evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships.  Webinar Flyer

Assessing the Risk for Venous Thromboembolism in Hospitalized Medical Patients

assessingMarch 3, 2016, 2:00 p.m. – 3:00 p.m. ET

The Division of Blood Disorders (DBD) is proud to offer its “Public Health Webinar Series on Blood Disorders.” This webinar series provides evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships.  Webinar Flyer

helpingChildren@2x_bacgroundHelping Children
 New Growth Charts for Children with Down Syndrome Available Online

Growth ChartsNew growth charts for children with Down syndrome in the United States are available to download from CDC’s Down Syndrome pages. These growth charts are designed for clinical use, based on a recent CDC-funded study in Pediatrics.  We invite you to review the key findings from this paper, to read the article’s abstract, and to download the growth charts.

What You Can Do

Parents, families, and partners: Spread the word and share the links for these new charts with healthcare providers and others.

Healthcare providers: Use these new charts to monitor growth among children with Down syndrome and assess how well a child with Down syndrome is growing when compared to peers with Down syndrome.

CDC is working in collaboration with its partners to learn more about Down syndrome by tracking the occurrence of the condition and conducting research, continuing toward the goal of improving the lives of children and families affected by Down syndrome. On behalf of CDC, we thank you for your continued support and promotion of CDC’s activities related to Down syndrome.

For more information about Down syndrome, visit CDC’s Down syndrome page.


Improving Health No BackgroundImproving Health
APHA 2016 Disability Section Awards

APHAThe Disability Section awards individuals or organizations that make major contributions the health and quality of life for people with disabilities through research, teaching, advocacy or practice. If you have questions about the nomination process, please contact Adriane Griffen, Awards Committee chair, with the words “Awards Nomination” in the email subject line. Read More…


BRIGHT FUTURES: NCBDDD Family Liaison Jeannette Mejas: Improving the health of People with disabilities

Jeannette MegiasThe Family Voices NJ Chapter has been selected to participate in the Bright Futures Preventive Services Implementation Project – State Spread (PreSIPS2). NJ Chapter team is comprised of a Lead Physician, Project Manager, Quality Improvement Coach, State MCH Representative and a Family Representative. The Family Representative is our very own Family Liaison for Improving the Health of People with disabilities, Jeannette Mejias. Jeannette Mejias is the 2015 NJ recipient of the Young MCH Professional Award recognized for substantial contributions to their state’s MCH program, their State’s maternal and child health outcomes, and for promoting and protecting the health of women, children, and families in her state. Read more…

Education for All: An Evening with AUCD

ed4allWednesday, March 2, 2016 at 6:00 p.m., The Carnegie Library, Washington DC

Education for All: An Evening with AUCD will be the first of what will be an annual celebration honoring the AUCD network’s accomplishments and, more importantly, the millions of people with disabilities who benefit from them. On March 2nd, we will shine the spotlight on our impact promoting inclusive disability policies and improving education outcomes for children and youth with disabilities. Read more…


2016 Tourette Association National Education & Advocacy Conference

TAA_Logo_Stacked_Chapter_WashD.C.March 8-13, 2016, Crystal Gateway Marriott, Arlington, VA

The Conference offers sessions for adults & teens with TS, parents, and professionals on a variety of topics that are grouped by track. Networking opportunities, allowing attendees to connect with one another to share information, stories, and inspiration will also be provided. Read more…


Tourette Association of America Announces Esteemed New President and CEO

John MillerThe Tourette Association of America, the premier national non-profit organization serving the Tourette Syndrome and Tic Disorder community, has selected John Miller as its new President and CEO. As the President and CEO of the Tourette Association, Mr. Miller will use his diversified executive experience to enhance the Association’s mission to raise awareness, fund research and provide ongoing support for all individuals affected by Tourette and Tic Disorders. Read more…


National Family Leadership Meeting and Reception

On March 29-31, 2016, family leaders from across the US will convene near Washington, DC, for a national Family Leadership Meeting and Reception.  The Family Leadership Meeting, co-sponsored by HRSA (MCHB) and Family Voices, is an opportunity to build leadership skills for family organization staff and other family leaders, with a special focus on engaging diverse families, through workshops on topics such as systems change at the local, state, and national systems level; recruiting, training, and supporting diverse leaders; youth leadership development; the cultural implications of health literacy; and more!  The meeting provides a forum for family leaders to interact with family organizations from every state, MCHB leaders, and other key Family Voices national partners.  In conjunction with the meeting, Family Voices is sponsoring a Champions for Children’s Health Reception on Capitol Hill to celebrate national champions for children and youth with special healthcare needs and their families.  To learn more and register, visit:  http://www.familyvoices.org/events/national?id=0006. Contact Ashlee Richey, arichey@familyvoices.org, with questions.   


News from NCBDDD
Executive Committee
NCBDDD’s Social Media Corner
CDC Zika Twitter Chat

Topic: Zika
Description: Join CDC for a Q&A session on Zika.
Date: Friday, February 12, 2016
Time: 11:00AM ET
Host: CDC
Missed the chat: Follow the discussion @CDCgov on Twitter and use #CDCchat.


March 3rd marks World Birth Defects Day. Join us as we increase the conversation on birth defects & their global effect with the World Birth Defects Day Thunderclap.

Thunderclap is a social media tool that allows supporters to sign up in advance to share a unified message at a specific time via their individual Facebook, Twitter, or Tumblr account. The collective action creates a wave of support – or “thunderclap” – across social media. Our thunderclap will go live March 3, 2016, at 9AM EST

How to Add NCBDDD Connect Badge to E-mail Signature:
  1. To add the “Connect with NCBDDD” button to an e-mail signature follow the steps below:
  2. Open Microsoft Outlook
  3. Go to File > Options > Mail > Signatures
  4. Right click the graphic below and select “copy”
  5. Paste the graphic into your desired signature in the “Edit signature” field
  6. Click on the graphic and then click the hyperlink icon in the top right of the “Edit signature” field
  7. Be sure http://www.cdc.gov/ncbddd/connect/index.html is listed in the URL box and hit OK


Submit Here
button to submit articles to AUCD 360 form News items may be submitted for consideration via email to acostalas@aucd.org. Send in updates on conferences, meetings, special awards and journal or research announcements for the next edition of the Friends of NCBDDD E-Newsletter! Submit program highlights with a short summary of 150-200 words to Anna Costalas by 3/11/2016. Photos and web links are encouraged!!

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The Friends of NCBDDD is a coalition of government and private sector participants who work together to enhance the mission and activities of the National Center on Birth Defects and Developmental Disabilities (NCBDDD) in promoting child development; preventing birth defects and developmental disorders/disabilities; and enhancing the quality of life and preventing secondary conditions among people who are living with mental or physical disabilities, or a combination thereof. For any questions regarding this edition or previous editions please contact Anna Costalas.

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