January 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
Friends of CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD)
Making Connections in 2016

register here

January 26, 2016 | 2pm-5:30pm
Hyatt Regency Washington on Capitol Hill | 400 New Jersey Avenue, NW
Washington, D.C., USA, 20001

Event Agenda

Call for Communications Committee members

Shannon Haworth, the incoming Executive Committee Communications Chair invites interested members to join the Communications Committee.The Committee will help create a communications strategy for 2016 around each thematic area and further the strategic goals of the Friends of NCBDDD. If you would like to join the committee please contact Shannon Haworth at shaworth@aucd.org. The Committee will also be reviewing the 2015 Communications Strategy and discussing a 2016 Strategy at the Friends of NCBDDD meeting on 1/26/16. We look forward to seeing you there!


Saving Babies
January is National Birth Defects Prevention Month!

Photo collage of children with text in the center sayingNational Birth Defects prevention Month #1in33Each January, we raise awareness among women about actions they can take for their own health and the family they may have one day. This year we encourage all women to make a PACT for birth defects prevention by planning ahead, avoiding harmful substances, choosing a healthy lifestyle, and talking to their healthcare provider.

January is also a time to recognize people living with birth defects. Throughout January, we will feature stories of families and people whose lives have been changed by birth defects. Join us in this nationwide effort to raise awareness of birth defects, their causes, and their impact. Help us spread the word!

Sign up for the #1in33 Thunderclap

Any time before 12 PM EST January 20, 2016, sign up for the #1in33 Thunderclap, which allows supporters to share a unified message at a specific time via their individual Facebook, Twitter, or Tumblr account. This collective action will create a wave of support – or “thunderclap” – across social media to raise awareness about birth defects.

Create a buzz about birth defects on social media

We will be sharing messages on these channels: @CDC_NCBDDD, @CDCgov, CDC Instagram, and CDC Facebook. Share and repost! During January, we will use 2 main hashtags:

  • #1in33 will mark messages featuring facts about birth defects and stories from families affected by these conditions.
  • #LivingMyPACT will mark messages sharing tips for a healthy pregnancy and ways people are living their PACT for birth defects prevention.

Have birth defects affected your life? Are you living your PACT for a healthy pregnancy? Share your own story or experiences! Create an original picture or video and post on social media tagged with #1in33 or #LivingMyPACT.

Check out our updated family stories

Read real stories from families to learn how birth defects affect people’s lives, why research is critically important, and how access to care and treatment has improved their overall quality of life.

Share buttons, images, and our new PACT infographic

We have created a new PACT infographic and social media buttons. Post these eye-catching graphics on your website, blog, or social media profile. For more resources and sample social media messages, visit our National Birth Defects Prevention Month webpage.

Read new research and web features

Check CDC’s Morbidity and Mortality Weekly Report (MMWR) website this month for new birth defects-related research findings. We will also be posting a series of web features on the CDC website.

Share these links with your colleagues and friends and continue to look for more CDC resources and information throughout January! For more information on National Birth Defects Prevention Month, visit our CDC website. Thank you in advance for your active participation and support of National Birth Defects Prevention Month. Read more…

Cost Savings of Spina Bifida Prevention After Folic Acid Fortification in the United States

folicThe American Journal of Preventive Medicine published a new study looking at the costs associated with a United States requirement that folic acid (a B vitamin) be added to all cereal grain products labeled as enriched (also called folic acid fortification). In this study, CDC researchers found that after folic acid fortification, an estimated 600-700 babies are born each year without spina bifida (a severe birth defect of the spine), who would have otherwise been affected were it not for fortification. They also estimated that the amount of money saved as a result of the fortification policy (also called cost savings) is around $400 million to $600 million dollars every year in the United States. These estimates can be useful to decision makers in other countries who are considering folic acid fortification. To learn more, we invite you to read a summary of the key findings or read the abstract of the article. Read more…

Protecting People
ACL Comments Needed: Measuring Quality in Home and Community-Based Services

Under contract with HHS, the National Quality Forum has published, for public comment, a 2nd draft report and materials on how the federal government should frame and measure quality in home and community-based services (HCBS). The posted report and materials include a synthesis of evidence and an environmental scan to assess the current HCBS quality measurement landscape.  ACL encourages you to carve a few moments out of your hectic schedule to read the report and materials and submit comments, input, and ideas on all aspects of the issue, including significant omissions, errors, or points that ring true from your perspective. The Public Comment Period is open until Tuesday, January 19, 6:00 PM ET.

ACHA Webinars Presents: Update on Percutaneous Valve Replacements

Tuesday, January 26, 2016, 7 pm – 8 p.m ET

ACHA WebinarHeart valves have been successfully repaired and replaced by surgeons for almost a century. Sometimes patients want less invasive options or are just too sick for surgery. If you want to learn more about how heart valves are replaced without opening the heart, who is a candidate, what are their options, and what they need to know about the procedure, you want to attend this webinar. Register today so you don’t miss out.  Read more…

Webinar Series on Blood Disorder: Impact of Public Health Surveillance on Hemophilia Care

Impact of Public Health Surveillance on Hemophilia CareFebruary 18, 2016, 2:00 pm – 3:00 pm ET

In this webinar, Dr. Soucie will discuss the purpose of public health surveillance and illustrate how CDC’s Division of Blood Disorders (DBD) has used this tool to assist in efforts to prevent the complications of bleeding disorders. Beginning in the early 1990’s, DBD’s bleeding disorders surveillance programs have been instrumental in collecting data needed to assess the number of affected individuals, the burden of the complications affecting people with bleeding disorders, and the outcomes of care. Analyses of these data have led to the discovery of important risk factors for these complications. The effectiveness of interventions designed to decrease complications has been evaluated by continued surveillance. Real world examples will be provided that demonstrate the ability of these surveillance programs to influence care and improve outcomes for people with these complex conditions. Click here to download the flyer

helpingChildren@2x_bacgroundHelping Children
Health Care Transition Clinical Report Reaffirmation

The clinical report,Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home,” from the American Academy of Pediatrics, American Academy of Family Physicians,  and American College of Physicians, originally published in 2011, received a statement of reaffirmation in the November 2015 issue of Pediatrics. It provides detailed guidance on how pediatricians, family physicians, and internists can incorporate better transition supports into their busy practices for all adolescents, including those with special health care needs, as they transition to an adult model of health care. The report calls for all transitions in care to be based on adequate preparation, proactive communication, and early engagement of patients, families, and referring and accepting physicians. It also provides strategies to overcome common challenges, including an algorithm to guide physicians through the transition process. Since the 2011 publication of the report, the National Health Care Transition Center/Got Transition has developed a package of transition tools and resources, called the Six Core Elements of Health Care Transition that are aligned with the clinical report. Got Transition also has developed a Transition Coding and Reimbursement Tip Sheet. For more information, visit http://www.gottransition.org/.

Trauma Informed Care: Perspectives and Resources

“Trauma Informed Care: Perspectives and Resources” is a comprehensive web-based, video-enhanced resource that includes video interviews, issue briefs, and key external resources. It supports state and local decision-makers, administrators, providers, and youth and family advocates to become more trauma-informed through eight modules. The tool highlights children and youth with complex behavioral health challenges including those with intellectual and/or developmental disabilities (IDD). In 2015, two new videos have been added to the resource tool—“Intellectual/Developmental Disabilities and Trauma” and “Safety without Seclusion and Restraint.” The “Intellectual/Developmental Disabilities and Trauma” video provides timely information about how trauma impacts individuals with I/DD, a vulnerable population. The “Safety Without Seclusion and Restraint” video discusses how to ensure safety in child-serving systems and organizations without the use of seclusion and restraint.  Read more…

Strategies to Enhance Care for Hispanic Children and Youth with Special Health Care Needs

Created by the National Center for Medical Home Implementation based on lessons learned from a community-based medical home project in Rhode Island, this fact sheet provides clinicians with strategies on how to enhance care for Hispanic children, youth and their families. Read more…

Rhode Island: Advancing the Medical Home Model in Pediatrics

The Rhode Island Pediatric Practice Enhancement Project places family/peer resource specialists in pediatric practices to enhance care coordination, family-centered care, and cultural competency for families and children. Learn about the project’s components, payment model, and outcomes by viewing the Rhode Island State Profile created by the National Center for Medical Home Implementation in partnership with the National Academy for State Health Policy. Read more…

Weiss Pediatric Care: Promising Practice in Pediatric Medical Home Implementation

Weiss Pediatric Care in Sarasota, Florida, is an innovative and promising practice in pediatric medical home implementation. Visit the National Center for Medical Home Implementation Web site to learn practical pediatric medical home implementation strategies utilized by Weiss Pediatric Care to provide care for families and children. Read more…


Improving Health No BackgroundImproving Health
United Spinal Webinar: NDNRC: Understanding the Health Coverage Needs of People with Disabilities

Thursday, Jan. 21, 2016 | 2:30 PM – 3:30 PM EST

Register for this webinar

Along with a general overview of the resources available through the National Disability Navigator Resource Collaborative (NDNRC), the presentation will include the newest “Health Insurance Jeopardy” round which focuses on the population specific fact sheets the NDNRC released last year. The presentation will cover questions you need to be thinking about when assisting consumers with disabilities such as intellectual disabilities, mental illness, multiple sclerosis, paralysis and veterans. In addition, the presentation will look at some trends observed by the NDNRC and where there is opportunity for advocacy. Read more…

RRTCDD 2016 Health and Wellness Series Webinar

RRTC on Developmental Disabilities and HealthMark your calendars! The Arc is hosting a series of webinars made possible through The Rehabilitation Research and Training Center on Developmental Disabilities and Health (RRTCDD).

The first webinar will focus on pregnancy outcomes for women with IDD

January 21, 2016,  3:00 pm – 4:00 pm ET

The existing research on pregnancy outcomes for women with intellectual and developmental disabilities (IDD) is sparse. Susan Parish will present findings from a study that analyzed the 2010 Healthcare Cost and Utilization Project Nationwide Inpatient Sample and compared deliveries among women with IDD to the general obstetric population. Women with IDD had longer hospital stays and were more likely to have Caesarean deliveries in contrast to other women. Rates of adverse pregnancy outcomes were elevated for women with IDD across a range of measures, including early labor, preterm birth, and preeclampsia, and their infants were more likely to have low birth weight, even after adjusting for age, race, ethnicity, and insurance type. Dr. Parish will discuss the implications of these findings, as well as the targeted interventions needed to address these deleterious outcomes. Read More…

Medication Prescribing for Pregnant and Childbearing-aged Women: Resources for the Practicing Clinician

logoJanuary 26, 2016, 2:00 pm – 3:00 pm ET

Taking some medications early in pregnancy—often before women know they are pregnant—can increase the risk for some birth defects and other poor pregnancy outcomes. While the public health message remains the same—pregnant women should not stop or start taking any type of medicine without first talking with a health care provider—the information available to health care providers to guide and support the decision making process is limited. The webinar will provide an overview of what is known about medication safety during pregnancy, relevant clinical considerations for prescribers and pharmacists and resources to help counsel women regarding treatment decisions before and during pregnancy. Click here to register today! 

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 American Foundation for the Blind Leadership Conference

AFBGet your calendar out, because the 2016 American Foundation for the Blind Leadership Conference is full of events you won’t want to miss. The American Foundation for the Blind’s annual Leadership Conference covers the most pressing and relevant topics in the field of blindness and offers many opportunities to learn from the best and brightest minds in our field, make new connections, and reunite with old friends while earning ACVREP and CRC CEUs. Review the agenda and register today for the best rate. If you represent an agency that would like to send three or more people to the conference, please contact Scott Truax about a group discount. And don’t forget to book your hotel room at the special group rate of $189/night at the Crystal Gateway Marriott. [Note that there are two Marriott hotels in Crystal City—use our link to ensure you book at the right one!] If you prefer to speak with a reservations specialist, please call 888-236-2427 and reference our conference to get the group rate or email passkeysupport@lanyon.com. Read more…

News from NCBDDD
Executive Committee
NCBDDD’s Social Media Corner

Join the #1in33 Thunderclap to raise awareness of National Birth Defects Prevention Month. 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 January 20, 2016, at 12PM EST and encourages people to make a PACT for birth defects prevention.

Update: Thank you to all of our National Birth Defect Prevention Month Thunderclap supporters. We’ve met our goal with 12 days left! Join us and let’s keep spreading the word and raising awareness this month.

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 1/15/2016. 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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