September 2016

♦ News from NCBDDD Executive Committee

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News from NCBDDD Executive Committee
Friends of NCBDDD Executive Committee Nominations

dialogue_resizedWe are accepting nominations for the Friends of NCBDDD Executive Committee to serve from January 1, 2017 to December 31, 2018.
Read More…


Friends of NCBDDD In-Person Meeting at AUCD2016

Register_ButtonDecember 7, 2016 | 1pm-5:00pm
The Renaissance Washington, DC Downtown Hotel
Ninth Street,  NW, Washington, DC, 20001
Volunteers are need join the planning committee.

Now Archived – All-Friends Quarterly Check In




Communications Committee Update

communicate.pngThe Communications Committee will be presenting on the Awareness campaign and tools on the September Quarterly call.


  • The goals of the Awareness program are to:
    Increase awareness of NCBDDD at CDC and public health agencies
  • Increase communication with others beyond members of the Friends
  • Increase awareness of how your organization plays a role in public health
  • Increase the visibility of the group, highlight programs, and to support the mission of group


Saving Babies
Obstetrician-Gynecologists Champions Gathering

championsOn August 12, the American College of Obstetricians and Gynecologists (ACOG), a funded partner of NCBDDD’s FAS Prevention Team, hosted its 2nd annual gathering of obstetrician-gynecologists who have been invited to serve as champions to help prevent alcohol use during pregnancy. ACOG is partnering with the University of Missouri and the National Organization on Fetal Alcohol Syndrome (NOFAS) to work with obstetrician-gynecologists, one of six disciplines targeted through NCBDDD’s efforts, to improve the prevention of alcohol-exposed pregnancies and FASDs. The photo shows nine champions in attendance representing various ACOG districts as well as ACOG program staff and partners from the University of Missouri and NOFAS.

September is Fetal Alcohol Spectrum Disorders (FASD) Awareness Month

fasdFASD Awareness Month is an expansion of FASD Awareness Day that has been held each year on September 9th since 1999. Fetal alcohol spectrum disorders (FASDs) can occur when a developing baby is exposed to alcohol before birth. FASDs are physical, behavioral, and intellectual disabilities that last a lifetime. Often, a person with an FASD has a mix of these problems. Fetal alcohol spectrum disorders are completely preventable if a developing baby is not exposed to alcohol before birth. Read more…

Public Health Grand Rounds, “Beyond the Blood Spot: Newborn Screening for Hearing Loss and Critical Congenital Heart Disease.”

grand-roundsTuesday, September 20, 2016 at 1 p.m. ET

We are pleased to present the September session of Public Health Grand Rounds, “Beyond the Blood Spot: Newborn Screening for Hearing Loss and Critical Congenital Heart Disease.” This session will be available via live webcast from CDC headquarters in Atlanta, Georgia on Tuesday, September 20, 2016, at 1 p.m. (ET). In this session of Public Health Grand Rounds, you will hear how some states have implemented point-of-care newborn screening and what challenges they have faced in standardizing these tests and tracking test results. Speakers will also discuss how public health partners at all levels can work toward ensuring that every baby is screened. Read more…


Protecting People
Stop the Clot, Spread the Word™ Campaign Launches New Educational Tools to Raise
Awareness About the Risks of Blood Clots Related to Hospitalization

Stop the ClotThe National Blood Clot Alliance (NBCA) has launched new content for its acclaimed Stop the Clot, Spread the Word™ campaign with the Division of Blood Disorders at the National Center on Birth Defects and Developmental Disabilities.   The Stop the Clot, Spread the Word™ campaign, first launched in 2015, is designed to increase general awareness about life-threatening blood clots.  This year, the campaign aims to sharpen people’s awareness about the increased risk for blood clots if they are about to be hospitalized or have recently been discharged from the hospital.  People are encouraged to discuss their individual risks for blood clots with their doctor and work together to develop a prevention plan before they enter the hospital. Read more…

Voices of 5,000+ Patients: The First National Survey on Experience of Care at U. S. Hemophilia Treatment Centers


Thursday, Sep 22, 2016, 2:00 p.m. – 3:00 p.m. ET

Shared decision making and a positive patient/healthcare provider relationship foster patient satisfaction, which is a core patient-reported outcomes measure that is critical to clinical care, quality, and research. Historically, U.S. Hemophilia Treatment Centers (HTCs) have individually assessed patient satisfaction. However, a national, standardized survey to enable comparison of HTC characteristics, trends over time, and variation by region was lacking. To remedy this information gap, in 2015 the U.S. HTC Network devised and conducted the first ever national HTC patient satisfaction survey. Read more…

Turning Points, 27th International Spina Bifida and Hydrocephalus Conference in Ghent, Belgium

spinaThe 27th International Conference on Spina Bifida and Hydrocephalus, Turning Points, takes place from Friday 28 October until Sunday 30 October 2016, in Ghent, Belgium.

The Turning Points conference is being organised by the International Federation for Spina Bifida and Hydrocephalus (IF), in close cooperation with the Flemish Association for Spina Bifida and Hydrocephalus (VSH), Ghent University, and the Spina Bifida team of Ghent University Hospital. Read more…

helpingChildren@2x_bacgroundHelping Children
Learn the Signs. Act Early, Milestones in Action

actearlyNCBDDD’s Learn the Signs. Act Early. program is proud to announce the release of Milestones in Action, a new online library of over 250 photos and videos showcasing early childhood developmental milestones from 2 months to 5 years of age. This FREE resource will help parents and other caregivers recognize milestones in their own children and can be used to train other care providers to recognize these important signs of early development. View and share this resource today!

Zika vaccine trial begins at Baltimore University

videoA Phase I trial of the Zika vaccine that was developed by the NIH began Tuesday with the inoculation of 18 volunteers at the University of Maryland School of Medicine, one of three sites where the vaccine will be tested. The primary goal of the trial is to determine the vaccine’s effect on the body and if it will trigger the production of antibodies against the Zika virus. Read more…

Improving Health No BackgroundImproving Health
Register Now: Enhancing Access to Care in South Carolina

scaccessThe California Rare Disease Surveillance Program invites you to attend a webinar to hear Dr. Julie Kanter-Washko talk about South Carolina’s efforts to enhance access to care for patients with sickle cell disease (SCD)
on September 22, 2016, from 10-11 am PST (1-2 pm EST).
Dr. Kanter-Washko is the director of sickle cell disease research
at the Medical University of South Carolina. Read more…

Join us for World Thrombosis Day Webinar

flyerWednesday, October 12, 2016, 11:00 a.m. – 12:00 p.m. ET

Speaker: Gary Raskob, PhD, Dean, College of Public Health, University of Oklahoma, Health Sciences Center, and Chairman of World Thrombosis Day Steering Committee

Moderator:  Elaine M. Hylek, MD, Professor of Medicine, Boston University and Member of World Thrombosis Day Steering Committee

Plus special remarks by CDC Director Tom Frieden, MD, MPH

Co-hosted by World Thrombosis Day (WTD) &  the Centers for Disease Control and Prevention (CDC)
Learn More I Register

National Sickle Cell Awareness Month

sickle-cellSeptember is National Sickle Cell Awareness Month. Throughout the month, CDC will be sharing information about sickle cell disease and highlighting CDC’s activities and resources. 

Sickle cell disease (SCD) is a genetic condition that is present at birth that affects approximately 100,000 Americans. Symptoms and complications of SCD are different for each person and can range from mild to severe. Complications of SCD include pain and other serious problems such as infection, acute chest syndrome, stroke, and more. Read more…

American Society of Hematology (ASH) and Partnering Groups Launch Sickle Cell Disease Coalition

logo-bannerOn Tuesday, September 6, ASH, along with more than 20 other member groups, issued a report titled the State of Sickle Cell Disease: 2016 Report, and launched the Sickle Cell Disease Coalition—a partnership whose goals are to amplify the voice of the sickle cell disease (SCD) community, promote SCD awareness, and transform SCD care both in the United States and around the globe. The Coalition and the Report were launched during a press event at the Newseum in Washington, DC. Opening remarks were made by ASH President, Dr. Charles Abrams, and following, a panel of experts spoke on the challenges facing those with Sickle Cell Disease. The panel included ASH Vice-President Dr. Alexis Thompson, patient advocate Kyle Smith, Patricia Kavanagh from the Emergency Department Sickle Cell Care Collaborative and Dr. Jon Mark Hirshon from the American College of Emergency Physicians. Read more about the report, launch, and chief priorities of the coalition in ASH’s press release, and stay up to date with coalition activities and progress on the website.


News from NCBDDD
Recent Publications
  • On August 18, the article, entitled Comparison of Two Disability Definitions – Behavioral Risk Factor Surveillance System (BRFSS), 2013, by Elizabeth Courtney-Long, Dianna Carroll, and Alissa Stevens, was published on Preventing Chronic Disease Journal.
  • A publication on paralysis by authors Brian Armour, Elizabeth Courtney-Long (RDHO), Mike Fox (OD) and others entitled Prevalence and Causes of Paralysis- United States, 2013 was recently published in the American Journal of Public Health (AJPH).  This publication was done in collaboration with the Christopher and Diana Reeve Foundation and the Administration for Community Living (ACL).
  • Researchers from NCBDDD’s, Division of Human Development and Disability published a study in the Journal of Racial and Ethnic Health Disparities looking at the relationship between income and education with two health risks—smoking and obesity—among people with disabilities from different racial and ethnic groups. According to this study, the proportion of adults living with disabilities varies by race and ethnicity, with the highest among American Indian/Alaska native adults (3 in 10) and lowest among Asian adults (1 in 10). Similar to people without disabilities, people with disabilities who report lower levels of income or education are more likely to smoke or be obese; however, this differs by race and ethnicity.  We invite you to read a summary of the key findings from this paper and to read the article’s scientific summary.
Executive Committee
Social Media Corner
  • Topic: FASD Awareness Month Twitter Chat
  • Description: Participants may ask questions, retweet, and add messages on FASD prevention and treatment.
  • Date: Tuesday, September 13th, 2016 
  • Time: 1 – 2PM ET  
  • Host: The National Organization on Fetal Alcohol Syndrome
  • Missed the chat?: Follow @NOFAS_USA and use #FASDchat to view the conversation.
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 is listed in the URL box and hit OK


Submit Here
News items may be submitted for consideration via email to 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 9/9/2016. Photos and web links are encouraged!!


  • AUCD | 1100 Wayne Avenue, Suite 1000, Silver Spring, MD 20910
  • 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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