July 2017

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News from Executive Committee

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News from Executive Committee
Hello, Friends of NCBDDD,

Greetings from the Executive Committee! We hope everyone is staying cool and hopefully getting a well-deserved summer vacation.

There have been some exciting Friends activities since our last newsletter. In late June, we were pleased to host Dr. Coleen Boyle at our Friends of NCBDDD Quarterly Webinar. Dr. Boyle gave an overview of the President’s FY 2018 budget request and answered questions from partners. It was a great conversation. If you missed it, be sure to check out the archived webinar (details below).  

Last week, the Friends of NCBDDD hosted a Congressional briefing titled “Zika: Still a Threat to Women and Infants.” The event was a big success with a standing room only crowd. Congressional staff heard updates from NCBDDD’s own Dr. Peggy Honein, a representative from the Baltimore County Health Department, the president of the American Congress of Obstetricians and Gynecologists, and the co-lead of Children’s National Health System’s Congenital Zika program. The briefing also featured remarks from Friends of NCBDDD member Barbara Altman. Dr. Altman shared her experience raising her son, Andrew, who was born with microcephaly. A big thanks to all of the Friends who helped make this briefing possible!

Thank you for your continued support for NCBDDD and the Friends. As always, please reach out with any ideas, question or concerns. Also, if you’re interested in staying up-to-date on the latest news regarding NCBDDD funding and advocacy efforts, please email me and we’ll get you added to the Advocacy Coalition listserv.

Best,
Becky Abbott
Chair, Friends of NCBDDD
rabbott@marchofdimes.org

Now Archived: FY 2018 NCBDDD Budget Briefing

view_webinar_buttonJoin the Friends of NCBDDD for a review of the President’s FY 2018 budget request for the Center with Dr. Coleen Boyle, NCBDDD Director.

Webinar Resources:

Saving Babies
National Birth Defects Prevention Network

The NBDPN Annual Report will be published in November’s issue of Birth Defects Research with a data brief focused on gastrointestinal defects. The issue will also include peer-reviewed articles on themes of birth defects surveillance and research. 

Save – the – Date for the Network’s 2017 Annual Meeting, which will be held as a virtual meeting September 13th and 4th in webinar format. Read more…

5 Papers Forwarded for Nomination for CDC’s Shepard Award
  • Grosse SD, Berry RJ, Tilford JM, Kucik JE, Waitzman NJ. (2016). Retrospective assessment of cost savings from prevention: folic acid fortification and spina bifida in the U.S. American Journal of Preventive Medicine, 50(5S1):S74-S80.
  • Holbrook JR, Cuffe SP, Cai B, Visser SN, Forthofer MS, Bottai M, Ortaglia A, McKeown RE. (2016). Persistence of parent-reported ADHD symptoms from childhood through adolescence in a community sample. Journal of Attention Disorders, 20(1):11-20.
  • Honein MA, Dawson A, Petersen E, Jones AM, Lee EH, Yazdy MM, Ahmad N, MacDonald J, Evert N, Bingham A, Ellington SE, Shapiro-Mendoza CK, Oduyebo T, Fine AD, Brown CM, Sommer JN, Gupta J, Cavicchia P, Slavinski S, White JL, Owen SM, Petersen LR, Boyle C, Meaney-Delman D, Jamieson DJ, for the US Zika Pregnancy Registry Collaboration. (2016). Birth defects among fetuses and infants of US women with laboratory evidence of possible maternal Zika virus infection during pregnancy. Journal of the American Medical Association, Dec 15. Epub ahead of print.
  • Maenner ML, Yeargin-Allsopp M, van Naarden Braun K, Christensen DL, Schieve LA. (2016). Development of a machine learning algorithm for the surveillance of autism spectrum disorder. PLoS One, Dec 21;11(12):e0168224.
  • Mazepa MA, Monahan PE, Baker JR, Riske BK, Soucie JM; US Hemophilia Treatment Center Network. (2016). Men with severe hemophilia in the United States: birth cohort analysis of a large national database. Blood, 127(24):3073-3081.
NICU Experience: Questions from Parents of Babies with Spina Bifida

sba-logo1.pngThe Spina Bifida Association recently created a pamphlet for new or expectant parents of babies born with Spina Bifida. The Neonatal Intensive Care Unit (NICU) can be a daunting place for parents of newborns, especially parents of newborns with Spina Bifida. SBA recently worked with Colleen Payne, a parent of a child with Spina Bifida and volunteer with SBA of Kentucky and Connect2NICU, to develop “The NICU Experience: Questions from Parents of Babies with Spina Bifida.” This pamphlet offers parents guidance every step of the way from dealing with the news of a Spina Bifida diagnosis to what to pack for the NICU to the various health care specialists who will care for and visit their baby at the hospital.  Read more…

Protecting People background imageProtecting People
CDC’s New Materials: Promoting Better Emergency Healthcare for Sickle Cell Disease

flyer 1CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to protect people and prevent complications of blood disorders. As part of this mission, NCBDDD is sharing steps to improve care in emergency departments (ED) of hospitals and clinics for people with sickle cell disease (SCD).

NCBDDD has released two fact sheets—one for those with SCD and another for emergency healthcare workers—to share information about ways to improve healthcare in the ED for patients with SCD.

Please share our fact sheets, blog, and other information about SCD with your networks to help increase knowledge about the healthcare barriers faced by many with this disease and help build the path to improvements. We will share messages about SCD on Twitter (@NCBDDD), Facebook, Instagram, and Pinterest—we invite you to follow, engage, and re-post! Read more…

Our Story Will Be Remembered

NHFOn September 16, 2017, a new memorial will be dedicated that will honor the lives lost to HIV/AIDS in the hemophilia community. Spearheaded by Jeanne White-Ginder, mother of Ryan White, and supported by the National Hemophilia Foundation (NHF); Hemophilia Federation of America (HFA); the Committee of Ten Thousand (COTT) and the National AIDS Memorial Grove, this will be the first permanent memorial erected to tragedy wrought on the hemophilia community by HIV/AIDS. Read more…

Available now! Educational Materials on VTE Selected for Use in New Joint Commission Compendium

Stop the ClotThe Joint Commission, which is an independent not-for-profit organization that accredits and certifies nearly 21,000 healthcare entities and programs in the United States, released a new compendium, or collection, of educational materials on venous thromboembolism (VTE) in June 2017.  This resource provides clinicians and healthcare educators with reliable and up-to-date patient education and discharge materials for patients discharged on anticoagulants (blood thinners). Included are several products jointly developed by the National Blood Clot Alliance (NBCA) and the National Center on Birth Defects and Developmental Disabilities (NCBDDD) at the Centers for Disease Control and Prevention (CDC). Read more…

helpingChildren@2x_bacgroundHelping Children
Ask the Expert Webinar: Make Learning Exciting: Apps for Executive Functioning

Stacy DriscollTuesday, August 1, 2017, 3:00 p.m. – 4:00 p.m. ET

In this educator edition of Ask the Expert, viewers will learn about apps–one type of assistive technology that can help students manage challenges associated with ADHD and executive functioning. The presenter will look critically at what makes these apps stand out above the rest, leaving viewers ready to use apps that best meet the needs of students in their classroom.
Read more…

 Participate in a Research Study on ADHD

NRCThe National Resource Center on ADHD maintains a listing of research studies on ADHD that are currently seeking participants. These studies have been vetted by CHADD’s Professional Advisory Board members for scientific integrity and contribution to the advancement of knowledge about ADHD. Find a study you are eligible to participate in–whether online or by selecting your state of residence. Read more…

Improving Health No BackgroundImproving Health
The Health is for Everyone: Action Team Success & You! 

The Health is for Everyone: Action Team (HEAT) works to attain training standards for inclusion of developmental disability in training curricula for physicians at the practice and medical education levels. The HEAT members are working together to build a solid developmental disability awareness at the current practice and training levels. Most recently, HEAT has been successful in getting the support of members of the American Medical Association House of Delegates to support the resolution, Inclusion of Developmental Disabilities curriculum in undergraduate, graduate and continuing education of physicians. HEAT is happy to share that the resolution was approved with only a minor edit to include stakeholders who develop curriculum. For more information click here

As part of our effort, we need to share medical education resources on developmental disability. Our goal is to cross-promote your resources, such as training curricula, PowerPoint presentations, handouts, scripts, case studies, etc., in curricula for physicians at the practice and medical education levels. This will help enhance the health care access resources in the Public Health is for Everyone toolkit. Please submit your medical education resources on developmental disability today! To share your resources, click here.

Participate in the Healthy People 2030 Process!

We’re happy to invite you to participate in the Healthy People 2030 development process. The online public comment period is open through September 29, 2017.

During this period, the Healthy People team is requesting your comments on the proposed framework for Healthy People 2030, which refers to the Healthy People 2030 vision, mission, foundational principles, plan of action, and overarching goals.

Participate now!

Public comment is an essential part of developing Healthy People. Members of the public — both individuals and organizations — are invited to submit comments on the proposed framework. We look forward to hearing from you!
Learn more about the proposed framework and see how to review and submit comments.

 

News from NCBDDD
Social Media Corner
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 http://www.cdc.gov/ncbddd/connect/index.html is listed in the URL box and hit OK

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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 acostalas@aucd.org. 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 8/10/2017. 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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