September 2017

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News from Executive Committee
Saving Babies
Helping Children
Protecting People
Improving Health
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News from Executive Committee
Happy September, Friends of NCBDDD,

Greetings from the Executive Committee! Happy (almost) fall and thanks for perusing our latest newsletter.

The Executive Committee is excited to report on a couple of Friends activities. First, we hope that you will join us for our upcoming Quarterly Check-in on September 28 (details below). We have a great agenda and look forward to your participation.

Second, your wonderful Membership Chair Sara Lyons has recently finished updating the Friends of NCBDDD membership directory. Thanks, Sara! We are pleased to report that we currently have 132 member organizations and 126 individual members. If you don’t see yourself or your organization listed, please contact Sara ( so that you can be added to the directory.

Thanks to all of you for your support of the Friends. Please feel free to reach out with questions, ideas or concerns.

Becky Abbott
Chair, Friends of NCBDDD

Friends of NCBDDD Quarterly Check-in

Thursday, September 28, 2017, 3:00 p.m. – 4:15 p.m. ET

The next Friends of NCBDDD quarterly webinar will feature  an update on NCBDDD activities from Dr. Coleen Boyle, a recap of recent Executive Committee actions, and a summary of ongoing efforts by the Advocacy Coalition. In recognition of National Sickle Cell Awareness Month, we’ll also hear from NCBDDD staff, organizational partners and our Protecting People Family Liaison on how NCBDDD is working to improve health outcomes for people with sickle cell disease. Register Here


Saving Babies
September is Fetal Alcohol Spectrum Disorders Awareness Month

Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person who was exposed to alcohol before birth. These effects can include physical, behavioral, and intellectual disabilities that last a lifetime. Often, a person with an FASD has a mix of these problems. In order to continue raising awareness about FASDs, we have posted a feature on CDC’s Features home page. The direct link to the feature (where it will remain accessible after it is gone from CDC’s Features page) is here. The feature is also available in Spanish. The feature tells the story of Frances, an adult woman living with an FASD. CDC would like to give a special thanks to Frances and the National Organization on Fetal Alcohol Syndrome (NOFAS) for sharing this story with us. Read more personal stories on the NOFAS website.

NBDPN 2017 Virtual Annual Meeting

NBDPNThe National Birth Defects Prevention Network (NBDPN) held its 20th Annual Meeting on September 13 and 14. The virtual meeting featured presentations on current issues in birth defects surveillance, research and prevention. Recordings of the sessions are available for viewing online.

 Zika Expert Forum

On August 30-31, 2017, members of NCBDDD, in collaboration with the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists, hosted the Forum on the Diagnosis, Evaluation, and Management of Zika Virus Infection Among Infants. This Forum convened clinical experts to review emerging evidence and collect expert input about the diagnosis, evaluation, and management of infants with possible congenital Zika virus infection. During this Forum, pediatric and obstetric specialists, non-governmental partners, and federal officials provided individual input on the clinical evaluation and management of congenitally exposed and infected infants in the United States. CDC collected this input to help inform potential future updates to guidance for the clinical evaluation and management of infants congenitally exposed to Zika virus and to inform strategies for communication and coordination of care. Read more…


Protecting People background imageProtecting People
September is National Sickle Cell Awareness Month

September is National Sickle Cell Awareness Month! This month, the Centers for Disease Control and Prevention (CDC) will share information and resources on sickle cell disease (SCD) to increase knowledge and awareness of the condition. SCD is an inherited disease, which means it can run in families.  SCD is present from birth. People with SCD have abnormal, “sickle” shaped red blood cells that stick to the blood vessels, blocking blood flow and oxygen to the body. This blockage can cause pain, infection, stroke, and other serious health problems. Read more...

Save the Date for the World Thrombosis Day 2017 Webinar 

You’re invited! Register to attend the WTD 2017 webinar, “Advances in Reducing the Disease Burden of Thrombosis,” taking place on Thursday, 12 October 2017, at 11:00 am US ET. Registration is FREE and all are invited to attend.

This event is proudly co-hosted by the International Society on Thrombosis and Haemostasis (ISTH) and the Centers for Disease Control and Prevention(CDC).  Event FlyerRegister Here

Living Well with Sickle Cell Disease – 9 Tips to Stay Healthy in College

SCDCollege students with sickle cell disease (SCD) can have a fun and safe college experience by taking a few safety precautions to keep themselves healthy.  SCD is an inherited blood disorder that can cause severe pain. So for students with SCD, the transition of leaving home to go to college can be a fun and exciting experience, but also challenging. By making smart health decisions, students with SCD can live full lives and enjoy their college experience. Read below to learn nine tips on how students with SCD can stay safe and healthy while at school. Read more…

helpingChildren@2x_bacgroundHelping Children


Register for AMCHP 2018!

Registration is now open for the 2018 AMCHP Annual Conference — the perfect opportunity to connect and network with more than 900 public health officials who share an interest in maternal and child health. The Annual Conference will be held February 10-13 in Arlington, Virginia. The theme is “Staying Focused: The Enduring Commitment of MCH to Families and Outcomes.” Register by January 5 to receive an early bird discount! For additional questions and information, please contact Emma Hoover at


Milestone Tracker Mobile App

milstonetrackerA new app from the “Learn the Signs. Act Early.” program is now available to help educate parents on childhood milestones from age 2 months to 5 years. From birth to age 5, children should reach milestones in how he or she plays, learns, speaks, acts, and moves.  Download the Milestone Tracker App from iTunes Today! Promote the Milestone Tracker App with this printable flyer[PDF – 310 KB].



Improving Health No BackgroundImproving Health
The Guide to Community Preventive Services and Disability Inclusion


On August 30, the American Journal of Preventive Medicine published The Guide to Community Preventive Services and Disability Inclusion, co-authored by a member of DHDD’s Disability and Health Branch. The Guide to Community Preventive Services (The Community Guide) is a collection of community-level evidence-based programs and policies that have been examined by the Community Preventive Services Task Force to promote health and prevent disease. The paper summarized findings from a Center on Disability at the Public Health Institute (Oakland, CA) assessment of Community Guide recommendations to identify adaptations that might be required to increase accessibility. Appropriate adaptations for people with disabilities could improve the reach of the recommendations.

Disability Inclusion in Communities across the US

Disability inclusion remains an important tenet within the Division of Human Development and Disability’s (DHDD) Disability and Health Branch, which is why the Branch funded the Reaching People with Disabilities through Health Communities project through the National Association of Chronic Disease Directors (NACDD). NACDD partnered with the National Center on Health, Physical Activity, and Disability (NCHPAD) to reach five states and 10 communities across the nation to develop and incorporate inclusive policies and programs at the local level. See their success in this short video. Read more…

Children’s Health Disparities in the News 

On July 29, CBS This Morning presented the importance of the findings of a recently published MMWR entitled Addressing Health Disparities in Early Childhood, a summary on the CDC Public Health Grand Rounds presentation in 2016 of the same name. The studies found that exposure to adversity and stressors such as poverty, lack of safety and stability in the home environment, and lack of access to quality early education can negatively impact a child’s development. These problems can have lifetime effects on learning, health, and earnings; however, responsive parenting and supportive community and health care environments for children early in life can optimize health and development.

The Challenges of Pregnancy in Adult Congenital Heart Disease: Best Practices

Are you an adult with congenital heart disease who wants to have a baby? Do you wonder about your changes of having a successful pregnancy? If so, you will want to attend this webinar. Dr. Marlon Rosenbaum, ACHD cardiologist, will discuss the management and challenges of pregnancy in a women with CHD. You will learn about what a pre-pregnancy evaluation involves. Potential issues related to specific forms of CHD will also be covered. Event Flyer/ Register Here


Webinar Series – University of Washington and National Council of Aging (NCOA)

This October, join the University of Washington and the National Council of Aging (NCOA) for an exciting three-day webinar series (October 16, 18, and 20) led by experts in the field of aging and disability.  Learn about recent research advances in key areas, including long-term services and supports, community access and autonomy, and healthcare policy changes for people aging with disabilities.  This webinar series is hosted with support from the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) and the National Council on Aging (NCOA). Description and registration information.

Announcing the Parents Center Website

The Lurie Institute for Disability Policy is delighted to announce the launch of a new website: Here, the National Research Center for Parents with Disabilities will share the results of our research and provide training and technical assistance to support parents with their disabilities and their families, and make available research results and helpful information about working with parents with disabilities to social workers, researchers, and legal professionals. Parents with disabilities and their families have shaped the development of this website and will remain pivotal in expanding the content. The National Research Center for Parents with Disabilities is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research, and by the Lurie Institute for Disability Policy, at the Heller School for Social Policy and Management, Brandeis University. 


News from NCBDDD
Social Media Corner
Join a Twitter chat
  • Topic: World Thrombosis Day Blood Clot Chat
  • Description: Participants will discuss risk factors, signs, and symptoms of blood clots.
  • Date: Friday, October 13, 2017 
  • Time: 12PM ET 
  • Host: @ThrombosisDay
  • To join: Use the hashtag #ClotChat to join.
Please Add NCBDDD Connect Badge to Your E-mail Signature:
  1. Open Microsoft Outlook
  2. Go to File > Options > Mail > Signatures
  3. Right click the graphic below and select “copy”
  4. Paste the graphic into your desired signature in the “Edit signature” field
  5. Click on the graphic and then click the hyperlink icon in the top right of 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 is listed in the URL box and hit OK


Submit Here
Do you have an update or event you would like to share with the Friends of NCBDDD? Newsletter items may be submitted for consideration via email to Send 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 10/10/2017. 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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