April 2016

♦ News from NCBDDD Executive Committee

♦ Saving Babies

♦ Helping Children

♦ Protecting People

♦ Improving Health

♦ News from NCBDDD

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News from NCBDDD Executive Committee
Communications Committee Awareness Program

In March the Communications Committee met to create a communications plan for 2016. From this meeting, the group initiated an Awareness Program. As part of this awareness program, the committee has created social media and dissemination tools. Read more…

Now Archived: Friends Grand Rounds Reaction Panel: Addressing Health Disparities in Early Childhood

View the webinar

 

Now Archived: Friends Quarterly Check In

View the webinar

 

Saving Babies
New online CDC tool can help public health officials plan for deliveries of infants to women with Zika virus infection in pregnancy

New online CDC tool can help public health officials plan for deliveries of infants to women with Zika virus infection in pregnancyCDC released a new report in the Emerging Infectious Diseases Journal that projects when public health officials can expect deliveries of infants at-risk for adverse outcomes after a Zika virus outbreak. Researchers used publicly-available data about the Zika virus outbreak in Bahia state, Brazil to illustrate:

Although not definitive, these findings from Bahia state, Brazil provide evidence that Zika virus infection during the first trimester or early in the second trimester of pregnancy is temporally linked with the observed increase in infants born with microcephaly. An online tool was developed to allow public health officials and researchers to replicate these projections using their own data to help inform and enable planning for deliveries of infants born to women who were infected with Zika virus during different trimesters of pregnancy.

Spina Bifida Association National Conference 

The 41st Spina Bifida Association (SBA) National Conference is being held this June 25th- 28th in Bloomington, Minnesota, and we are thrilled to be going Beyond All Limits for the Spina Bifida community! You won’t want to miss all the speakers, sessions, networking, and fun this summer in Bloomington. Read more…

Advocates Hail FDA Decision to Improve Infant Health, Prevent  Birth Defects

Advocates enthusiastically praised today’s announcement by the U.S. Food and Drug Administration (FDA) that the agency will permit fortification of corn masa flour with folic acid to prevent birth defects, effective immediately.  The announcement reflected a decision to accept a Citizens’ Petition filed in 2012 by the March of Dimes, American Academy of Pediatrics, Spina Bifida Association, National Council of La Raza, Royal DSM and Gruma Corporation. Read more…

Honor Award for the Development of a Birth Defects Surveillance Toolkit

The Division of Congenital and Developmental Disorders (DCDD) Surveillance Working Group was awarded the 2015 CDC Honor Award for their development of a birth defects surveillance toolkit.  The toolkit is the first of its kind – a comprehensive birth defects surveillance tool for public health professionals working in low- and mid-resource countries where birth defect prevalence is high, awareness and medical care for affected individuals is lacking, and capacity for birth defect surveillance is low. This Award represents the power of strong partnerships, dedicated staff, and supportive leadership. Read more…

FAS Prevention Team Partner, Dr. Mary M. Velasquez, to Be Recognized by the Association for Medical Education and Research in Substance Abuse

Dr. Mary M. VelasquezDr. Mary M. Velasquez, Director of the Health Behavior Research and Training Institute and Professor in the University of Texas-Austin School of Social Work, has been selected to receive the Association for Medical Education and Research in Substance Abuse (AMERSA) 2016 Betty Ford Award. This prestigious award is given annually to an individual who has had a significant impact on the field of alcohol and drug use, particularly with regard to women’s issues, substance abuse education and recovery. AMERSA is recognizing Dr. Velasquez for her more than 20 years of research focusing on areas of high importance for women. With funding from the National Institutes of Health and Centers for Disease Control and Prevention, Dr. Velasquez has developed and tested health interventions to target alcohol, cocaine, smoking, and other substances of abuse, promote prenatal health, and prevent sexually transmitted infections and alcohol-exposed pregnancies.

FAS Prevention Team Conducts Two Site Visits

 FAS Prevention Team Conducts Two Site VisitsOn February 29th, NCBDDD’s Fetal Alcohol Syndrome Prevention Team member Mary Kate Weber met with grantees working on prevention, identification and care of fetal alcohol spectrum disorders in the disciplines of social work, family medicine, pediatrics, and obstetrics/gynecology in Houston, Texas. The meeting focused on information sharing and updates. Major areas of discussion included inter-professional education/training, course development (both online and face-to-face) and “Champions.”

On March 2-3, a group of grantees funded to advance the work of nurses in the prevention, identification and care of fetal alcohol spectrum disorders met in San Diego for a planning retreat. The 2-day meeting was hosted by the University of California at San Diego’s (UCSD) Center for Better Beginnings.  Read more…

 
Protecting People
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  

Cregister hereDC’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. In this webinar, Dr. Margaret V. Ragni will review the natural history of HCV infection in people with hemophilia and discuss the related risks and their management, including increased rates of bleeding episodes, hepatocellular cancer, and liver transplantation. She will also provide an update on promising new therapies designed to eliminate the virus from infected individuals  Read more..

  
helpingChildren@2x_bacgroundHelping Children
Honor Award for the Act Early Ambassador Program

CDC’s “Learn the Signs. Act Early.” (LTSAE) Team received the 2016 CDC Honor Award for Excellence in Program Delivery (Domestic) for their Act Early Ambassador Program. This program inspires and helps sustain ownership of the LTSAE mission, messages, and materials far beyond the walls of CDC, helping hundreds of thousands of families and professionals across the country track children’s development and act early on concerns. The Ambassador program has proven to be a highly effective delivery strategy resulting in systems-level impact and lasting integration of LTSAE messages and materials in over 30 states. This is the third CDC Honor award for the LTSAE team in the last two years.

In the coming weeks, LTSAE and the Association of University Centers on Disabilities (AUCD) will announce the next two-year cohort of Act Early Ambassadors, expanded from 30 to 45 Ambassadors. Visit CDC’s website to learn more about the LTSAE Act Early Ambassador Program.

 

Improving Health No BackgroundImproving Health
ACHA Webinar
ACHA Webinars Presents: End of Life – Advance Care Planning in CHD

Wednesday, April, 20, 2016, 7:00 p.m – 8:00 p.m. ET

The landscape of congenital heart disease (CHD) care has changed and there are now more adults than children living with CHD. While a difficult conversation for patients and health providers, talking with your family and your ACHD healthcare team about End of Life (EOL) care is an important part of your healthcare planning. What does this mean? When is the right time? Who should initiate it? What is the difference between palliative care and hospice? Register today to learn about all of this, as well as what is meant by advance directives, living will, and power of attorney. You don’t want to miss this webinar.  Read more…

 

ACHA Webinar
Living Well With Eisenmenger Syndrome

Wednesday, May 4, 2016, 7:00 p.m – 8:00 p.m. ET

Have you been told you have high blood pressure in your lungs, low oxygen levels, cyanosis or blueness, or Eisenmenger Syndrome? If so, you don’t want to miss this webinar. Register today to learn more about ways to improve your quality of life. Dr. Ian Harris, noted ACHD cardiologist, will talk about new and exciting advances in the treatment opportunities for those living with Eisenmenger Syndrome. Read more…

 

News from NCBDDD
Executive Committee
Champions
NCBDDD’s Social Media Corner
Past Twitter Chats
  • Topic: National Public Health Week
  • Description: Participants will discuss emerging public health issues.
  • Host: American Public Health Association
  • Follow: @PublicHealth and use #NPHWchat to join.

  • Topic: Zika
  • Description: Participants discussed general education awareness on Zika 
  • Host: Reuters_Health
  • Follow: @Reuters_Health and use #ReutersZika to join.
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  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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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 5/10/2016. 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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