March 2016

♦ News from NCBDDD Executive Committee

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News from NCBDDD Executive Committee
 

Dear Colleagues:

fiscal year coverOnce again, it’s with great pleasure that I announce the launch of our Fiscal Year 2015 Annual Report I continue to be proud of our staff, the work that we’re doing from day-to-day, and progress that we’re making around so many critical topics.  We’re making a difference and the Annual Report exemplifies these efforts.

In this report you will find information on our Center’s accomplishments, future directions, notable scientific publications, budget, and state funding.  Also featured are our new center and partner videos.

Thematic areas revisited in the report include:

themeareas

To view the report in its entirety visit: http://www.cdc.gov/ncbddd/aboutus/annualreport2015/index.html

In the coming weeks we will continue to promote the release of the annual report through a variety of outlets including our social media channels and the Friends of NCBDDD pathways.

I’d like to thank everyone that contributed to the report, from content development and clearance by the Divisions and OD, to programming by our Center web team.  Your support and help throughout this process have been enormously appreciated.

Thank you again,

Coleen

Coleen A. Boyle, PhD, MS hyg
Director
National Center on Birth Defects and Developmental Disabilities
Centers for Disease Control and Prevention
4770 Buford Hwy.

 
Archived: Friends Quarterly Check In
View the webinar
Archived: NCBDDD Partner Briefing
View the webinar
Friends of NCBDDD Communications Committee

The Communications Committee had it’s first call of the year on 3/10/16. A 2016 Friends of NCBDDD Communications plan was approved. Read more.

 
Saving Babies
World Down Syndrome Day

wdsaMarch 21 is World Down Syndrome Day! In the United States, about 1 in every 700 babies is born with Down syndrome every year. Access stories about families living with Down syndrome on CDC’s Stories: Down Syndrome | Birth Defects | NCBDDD | CDC.  Share your story and help us raise awareness about Down syndrome using #WDSD2016. Look for a CDC Feature soon with more information about more ways you can recognize and support World Down Syndrome Day.

 
World Birth Defects Day – New Coloring Pages for Children
WBDD

In honor of World Birth Defects Day, and in an effort to raise awareness and reduce stigma of birth defects, CDC developed downloadable coloring pages for children of all ages. Share the link and access PDFs of the Coloring Pages for Kids here.

 

Success!! World Birth Defects Day 2016

world birth defects day.pngWorld Birth Defects Day (WBDD) 2016 was a success! Thank you to all of you who supported and joined in this year’s WBDD activities. On March 3, 947 supporters with a social reach in excess of 4.8 million followers participated in the WBDD Thunderclap. Additionally, the Buzz Day on Twitter, hashtag #WorldBDDay, reached an audience of nearly 4 million accounts and 9.5 million impressions. We know that many of you joined these efforts to bring increased awareness on the occurrence of birth defects, reduce stigma, and increase opportunities for prevention. The International Clearinghouse for Birth Defects Surveillance and Research is currently polling the more than 60 organizations who formally joined and conducted activities promoting WBDD to learn specifically what was accomplished; this information will be posted on their website in the future. Read more…

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…

3rd Annual CHD Symposium

logo-mlhMended Little Hearts is hosting its 3rd Annual CHD Symposium in Chicago, IL (Rosemont area) on July 22-23, 2016.  Attached is a working agenda and the Symposium flyer.  We are really excited about this event.  Last year, we had 160 participants from the U.S., Mexico and Canada who came to learn about innovations in CHD treatment and care and about tools and resources for families as well. CHD Symposium Flyer  / CHD Symposium Agenda 

Protecting People
Making the Case for a Public Health Approach to Rare Diseases

logo-rare-disease-dayFebruary 29th is Rare Disease Day. In the recently-published article, Public Health and Rare Diseases: Oxymoron No More, CDC researchers discuss using a public health approach to address rare diseases such as fragile X syndrome,spina bifida, and Duchenne muscular dystrophy. These three conditions, part of a group of almost 7,000 rare diseases, are complex conditions which can be life-threatening and physically or mentally disabling. The impact these conditions have on patients and their families, communities, and the healthcare system in general calls for attention from the public health community. Read more…

Neurocognitive Issues in Adults with Congenital Heart Disease

WeACHAdnesday, March 23, 2016, 7 p.m. – 8 p.m. EDT

With advances in surgical care, more children with congenital heart disease (CHD) are surviving into adulthood. With this, we are learning that the side effects of some procedures can affect the nervous system and mental processing. Are you interested in learning what these are and what this means for adults living with CHD? If so, you don’t want to miss this webinar. Register today and you will find out what research is telling us.  Read more…

Upcoming! Webinar Series on Blood Disorders: Updated on Treatment of Hepatitis C Infection in People with Hemophilia
April 21, 2016, 2:00 – 3:00 p.m. ET  

ragni_m4988CDC’s Division of Blood Disorders (DBD) is proud to offer its “Webinar Series on Bleeding and Clotting Disorders.” The purpose of this series is to provide evidence-based information on new research, interventions, emerging issues of interest in blood disorders, as well as innovative approaches in collaborations and partnerships. We invite you to join us in this series.

Presented by Margaret V. Ragni MD, MPH, Professor of Medicine, Division Hematology/Oncology, Director, Hemophilia Center of Western PA

Read more..

Now Archived: Assessing the Risk for Venous Thromboembolism in Hospitalized Medical Patients

assessingNBCA, as part of its cooperative agreement with the Centers for Disease Control and Prevention (CDC), recently hosted a very successful webinar, part of the Division of Blood Disorders (DBD) ongoing series of public health webinars, regarding VTE risk assessment in hospitalized medical patients. A record number or participants for the DBD Public Webinar Series on Blood Disorders registered for this live online event, which featured guest speaker Alex Spyropoulos, MD, Professor of Medicine Hofstra Northwell School of Medicine.  The webinar is currently housed on NBCA’s website here: NBCA Webinar Archive and will soon also be archived on CDC’s website here:  DBD Webinar Series Archive.  NBCA also is working with CDC under this same cooperative agreement to gear up for the launch of year two efforts for their widely acclaimed Stop the Clot, Spread the Word™ campaign. 

Employment Opportunity: Supervisory Research Health Scientist/Supervisory Research Epidemiologist

CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) has initiated the hiring process for the Chief position in the Development Disabilities Branch in the Division of Congenital and Developmental Disorders.  Read more..

 

helpingChildren@2x_bacgroundHelping Children
CDC’s Public Health Grand Rounds Presents: “Addressing Health Disparities in Early Childhood”
Tuesday, March 15, 2016, 1:00 p.m. – 2:00 p.m. ET

phgr_180x150The first years of a child’s life are some of the most important in terms of cognitive, social, and physical development. Early experiences occurring when a child’s brain and behavior are being shaped affect a child’s ability to learn, to get along with others, and to develop an overall state of well-being. Unfortunately, not all children have the same positive experiences or opportunities, which can lead to disparities. Social, economic, and environmental factors have been closely linked to health disparities. Research suggests that many disparities in overall health and well-being are rooted in early childhood. Read more..

Friends Grand Rounds Reaction Panel: Addressing Health Disparities in Early Childhood
Tuesday, March 15, 2016, 2:15 p.m. – 3:00 p.m. ET

register hereResearch shows that many disparities in overall health and well-being are rooted in early childhood. Those who lived in poverty as young children complete fewer years of school, have lower earning potential as adults, and are more likely to experience poor health, both physical and mental. The youngest children are often the most at-risk, and early childhood health disparities are a growing problem in the United States. Join Friends of NCBBDDD as we discuss reactions to CDC Public Health Grand Rounds Addressing Health Disparities in Early Childhood.

AAP Introduces Online Motor Delay Tool

The American Academy of Pediatrics (AAP) recently launched Physical Developmental Delays: What to Look For, an interactive online tool, for parents of children ages 5 and under to use when they are concerned about their child’s motor development.

The tool lists physical activities by the age at which they are typically performed. If a parent is concerned that their child has not achieved a certain milestone or if there have been setbacks, parents can click on boxes included next to activity descriptions. This creates a list – with space for notes – that can be taken to the next medical appointment.

Health care providers who are approached by parents and caregivers with these concerns can refer to the AAP clinical report, Motor Delays: Early Identification and Evaluation, which includes an algorithm to guide developmental surveillance and screening, red flags signaling a need for prompt referral and recommendations, including appropriate testing.

Physical Developmental Delays: What to look for

NCBDDD is pleased to announce the launch of Physical Developmental Delays: What to look for. Designed for parents concerned about the physical development of their child, the tool reinforces that parents know their child best. Physical Developmental Delays: What to look for was developed as part of a three-year collaboration between the Center and the American Academy of Pediatrics (AAP). Read More…

Jennifer Pineo is the Project Coordinator at NH Family Voices and the Family Liaison to Friends of NCBDDD in the thematic area of Helping Children with Autism and Other related Developmental Disabilities. On Twitter @JennatNHFV.

 
April is autism awareness month!

autism-awareness-month.pngNew Hampshire will be coordfriendsofncbddd.org/physical-developmental-delays-what-to-look-forinating a few events to promote autism awareness.  We are currently in the last year of our Autism grant and will release of our State Plan for Services and Supports for Autism.  The release of the NH report will be in collaboration with the NH Autism Council’s request that Governor, Maggie Hassan do a proclamation declaring April as Autism Awareness month in New Hampshire.  Additionally, this year the New Hampshire Department of HHS Public Information Office will be tweeting information about ASD.  We are excited to be a part of so many activities designed to raise awareness and share information about Autism.   New Hampshire Families and Self Advocates will also be taking part in other activities across the state.  What is happening in your state for Autism Awareness Month?

Jennifer Pineo is the Project Coordinator at NH Family Voices and the Family Liaison to Friends of NCBDDD in the thematic area of Helping Children with Autism and Other related Developmental Disabilities. On Twitter @JennatNHFV.

 

Improving Health No BackgroundImproving Health
APHA 2016 Disability Section Awards: Due 4/1/16

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…

 
Expanding our Reach, Impacting the Future

The 2016 Family Leadership Conference, sponsored by Family Voices and MCHB, will take place on March 30-31st in Rockville Maryland. While the number of registrants is encouraging, we are interested in increasing the number of diverse Family Leaders enrolled at the conference.  We encourage family and professional organizations to send diverse representation to grapple with today’s pressing issues that affect our communities.   Limited scholarship funds are available to support new/diverse Family Leaders attendance.    

The purpose of the Family Leadership Conference is to build leadership skills for family organization staff and other family leaders, with a specific focus on developing diverse family leadership. Several presentations are devoted to diversity issues. For example, Diana Denboba, who serves on the National Congress of Black Women, Prince George’s County Chapter and FV Cultural Competence Board Committee and is the Retired Branch Chief and Program Director of the Integrated Services Branch, MCHB, will lead a candid discussion on Cultural Reciprocity and Responsiveness.  Ms. Denboba will engage participants in a facilitated discussion about the essential responsibility of family organizations to be responsive to the needs of all families from diverse cultures, races, socio-economic status and other underserved populations.  Other sessions include “Cultural Implications of Health Literacy” , “Recruiting, Training, & Supporting Underserved Families in Leadership”,  “Promising Practices in Working with Diverse Families” “Supported Decision Making” and roundtables offering additional discussion time on each of these topics. For the full conference schedule go to: There is still time to register!  

 

News from NCBDDD
 

Executive Committee
Champions
NCBDDD’s Social Media Corner
CDC Twitter Chat
  • Topic: Debunking the Myths of Preparedness
  • Description: Emergency Managers and emergency-focused organizations across the nation will debunk common preparedness myths and offer preparedness actions people can take now for their local hazards.
  • Date: Wednesday, March 30th, 2016
  • Time: 2pm – 3pm ET
  • Host: @FEMA
  • To join: Follow @FEMA and use #SafetyFact to join.
 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

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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 4/11/2016. 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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