December 2016

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News from NCBDDD Executive Committee

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News from NCBDDD Executive Committee

Happy Holidays to YouHappy Holidays to You!

The Friends of NCBDDD wish you and everyone you serve the brightest holiday season!

Executive Committee Members-Welcome and Thanks

Our newly elected 2017 Executive Committee members and our 2016 Executive Committee members who are rotating off were recognized at the Friends of NCBDDD In-Person meeting last week! We look forward to working with everyone in the New Year!

Read more | Full Executive Committee Roster

Communications Committee Listserv ReminderCommunications Committee Listserv Reminder

Did you know that if you are a member of the Friends of NCBDDD that you can use the listserv to disseminate information to the group? Our listserv address is: FriendsNCBDDD@lyrisvs.aucd.org. If you have an urgent request for the group, or want to share important information, feel free to use the listserv.

Saving Babies

Zika Coalition

As part of our long-term strategy, the March of Dimes is developing a website for the Zika Coalition and would like to list all interested members on this website. In order to do so, your permission to publicly list your organization is needed. Your organization will not be listed without this permission – this is “opt-in”, not “opt-out”. All members of the Friends will receive an update on the progress of the website. Please complete the Google Survey here by January 5, 2017 to be listed as a member of the coalition on the website.

January is National Birth Defects Prevention Month!

January is National Birth Defects Prevention MonthEach January Centers for Disease Control and Prevention (CDC) raises awareness among women about actions they can take to prevent birth defects. The Zika virus has led to renewed focus on how some infections can increase the risk of certain birth defects. This January we will encourage women to Prevent to Protect: Prevent infections for baby’s protection. To prevent infections, women can talk to their healthcare provider, properly prepare food, and maintain good hygiene. Women can protect themselves from Zika infection by avoiding mosquito bites and avoiding travel to areas with Zika. Zika can also be passed through sex from a person who has Zika to his or her partners. Using condoms correctly can reduce the chance of getting Zika through sex.

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 #Prevent2Protect Thunderclap

Any time before Noon ET January 18, 2017, sign up for the #Prevent2Protect Thunderclap, which allows supporters to share a unified message at a specific time via Facebook, Twitter, or Tumblr.

Create a buzz about birth defects on social media

Create an original picture or video and post on social media tagged with #Prevent2Protect.

#Prevent2Protect will mark messages sharing tips for how women can reduce their risk of getting an infection during pregnancy.

Read new research and web features

Check CDC’s birth defects website for more information throughout the month. We will also be posting a series of web features on the CDC website.

Thank you for your active participation and support of National Birth Defects Prevention Month.

Publication: “The Facts about Zika: What to do Today”

Members of NCBDDD’s Child Preparedness Unit and others around DHDD published an article in You and Your Family magazine entitled “The Facts about Zika: What to do Today” (p. 24-25). The article is available here.

Congratulations, Dr. Cheryl Broussard!

NCBDDD is pleased to announce that Dr. Cheryl Broussard has been chosen as NCBDDD’s Division of Congenital and Developmental Disorders (DCDD) new Associate Director for Science (ADS). Cheryl has previous experience as the ADS in DCDD, having served twice as acting ADS. Cheryl started her new role on December 11.

Most recently, Dr. Broussard has been the lead scientist for the Treating for Two: Safer Medication Use in Pregnancy initiative. She has led a federal interagency workgroup on medications and pregnancy and has served on several expert committees including one focused on prenatal use of opioid medications. Dr. Broussard recently received the prestigious Presidential Early Career Award for Scientists and Engineers in recognition of her work protecting and promoting the health of pregnant women and babies through innovative research.

Dr. Broussard joined CDC in 2007 as an Epidemic Intelligence Service (EIS) officer, and later served as an advisor to the EIS program. She received her PhD in epidemiology from the University of Texas (UT) School of Public Health at Houston and her MA in health education from UT-Austin. Her first career was as a middle school science teacher in Texas. She is a native of Louisiana.

NCBDDD would also like to thank Dr. Leslie O’Leary for her dedicated service as the Acting Associate Director for Science for almost 18 months. Leslie has nearly 20 years of great work at CDC. She has truly been a utility player in the Division, having been the managing director of the Metropolitan Atlanta Congenital Defects Program, and supporting state-based birth defects and fetal alcohol syndrome surveillance programs. Over the past couple of months, Leslie has been doing double duty as the acting ADS and acting Lead for the Partnership and Applied Epidemiology Team.

Protecting People background imageProtecting People
Protecting People
New Journal Supplement Showcases Successful Initiatives to Prevent Healthcare-Associated Venous Thromboembolism

Public and private healthcare practices and systems across the country are taking aim at preventing blood clots linked to recent hospitalizations or surgeries, known as healthcare-associated venous thromboembolism (HA-VTE). Their initiatives are showcased today in a supplement issue of the Journal of Hospital Medicine. Venous thromboembolism (VTE) includes blood clots that occur in deep veins of the legs, pelvis, or arms (known as deep vein thrombosis or DVT) and blood clots in the lungs (known as pulmonary embolism or PE). VTE is an important and growing public health issue.

Spread the word! We encourage you to share information about the supplement with your colleagues and friends. We will be promoting the supplement on Twitter @CDC_NCBDDD. We invite you to comment, re-post, re-tweet, and follow @CDC_NCBDDD! For more information about HA-VTE, please visit http://www.cdc.gov/ncbddd/dvt/ha-vte.html and for more information about the Healthcare-Associated VTE Prevention Challenge, please visit http://www.cdc.gov/ncbddd/dvt/ha-vte-challenge.html. Thank you for your continued support and for your interest in learning more about blood clot prevention.

helpingChildren@2x_bacgroundHelping Children

American Academy of Pediatrics Webinar Series on Fetal Alcohol Syndrome

American Academy of Pediatrics (AAP) is offering a webinar series designed to educate practitioners on fetal alcohol spectrum disorders and the impact on clinical practice.

Webinar #1
FREE Educational Webinar – FASD: Screening, Assessment, and Diagnosis (January 18, 2017)

Join the American Academy of Pediatrics for a free 30-minute webinar on Wednesday, January 18 at 4pm ET titled Fetal Alcohol Spectrum Disorders (FASD): Screening, Assessment, and Diagnosis. This webinar will focus on defining the terms used to describe the conditions under the umbrella of FASD, describing the signs that may indicate prenatal alcohol exposure and a possible condition along the continuum of FASDs. Primary care clinicians are encouraged to attend. Register for the webinar today!

Webinar #2
FREE Educational Webinar – Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE) (January 25, 2017)

Join the American Academy of Pediatrics for a free 30-minute webinar on Wednesday, January 25 at 4pm ET titled Neurobehavioral Disorder associated with Prenatal Alcohol Exposure (ND-PAE). This webinar will focus on the factors in a patient’s medical history and clinical presentation that may indicate the presence of ND-PAE. Participants will learn about the domains in which children with this disorder struggle with behavior and developmental tasks. Primary care clinicians are encouraged to attend. Register here!

Webinar #3
FREE Educational Webinar – Treatment Across the Lifespan for Persons with a Fetal Alcohol Spectrum Disorders (February 1, 2017)

Join the American Academy of Pediatrics for a free 30-minute webinar on Wednesday, February 1 at 4pm ET titled Treatment Across the Lifespan for Persons with a Fetal Alcohol Spectrum Disorders. This webinar will focus on identifying and managing neurobehavioral and medical concerns at different developmental stages. Participants will learn about medical, therapeutic, and pharmaceutical considerations. Faculty will present evidence-based interventions that are applicable to community-based primary care pediatricians. Primary care clinicians are encouraged to attend. Register here!

Fetal Alcohol Syndrome (FAS) Prevention Team

NCBDDD’s Elizabeth Dang represented CDC’s FAS Prevention Team as Acting Team Lead at the Fall Executive Committee meeting of the Interagency Coordinating Committee on Fetal Alcohol Spectrum Disorders (ICCFASD) on November 29, 2016. The ICCFASD fosters improved communication, cooperation, and collaboration among disciplines and federal agencies that address issues related to prenatal alcohol exposure. The ICCFASD is sponsored and chaired by the National Institute on Alcohol Abuse and Alcoholism. Other agencies in attendance included the Administration on Children and Families, Health Resources and Services Administration, National Institute of Child Health and Human Development, National Institute on Drug Abuse, Substance Abuse and Mental Health Services Administration, and the U.S. Department of Justice. In addition, a special panel discussion was held on Profiles of the Birth Moms: Implications for Improving our Messaging. Panelists included Mary J. O’Connor, PhD, David Geffen School of Medicine, UCLA; Heather Carmichael Olson, PhD, Seattle Children’s Hospital; Ken Lyons Jones, MD, UCSD; and Kathleen T. Mitchell, MHS, LCADC, National Organization on Fetal Alcohol Syndrome.

Urologic and Renal Protocol for the Newborn and Young Child

On Monday November 7th NCBDDD’s Rare Disorders and Health Outcomes (RDHO) team held their annual principal investigator meeting for the Urologic and Renal Protocol for the Newborn and Young Child. The meeting included reviewing the first year of data and identifying steps to improve data quality and “missingness.” The group also addressed the reasons families gave for missing clinic visits.

Urologic and Renal Protocol for the Newborn and Young Child

On Monday November 7th NCBDDD’s Rare Disorders and Health Outcomes (RDHO) team held their annual principal investigator meeting for the Urologic and Renal Protocol for the Newborn and Young Child. The meeting included reviewing the first year of data and identifying steps to improve data quality and “missingness.” The group also addressed the reasons families gave for missing clinic visits.

Publication: “Progress in Standardization of Reporting and Analysis of Data from Early Hearing Detection and Intervention (EHDI) Programs”

NCBDDD’s EHDI team has been published in the Journal of Early Hearing Detection and Intervention. The article “Progress in Standardization of Reporting and Analysis of Data from Early Hearing Detection and Intervention (EHDI) Programs” describes the continued need for standardization in data reporting, how lack of standardization impedes children’s receiving services, and the steps taken to improve the situation. This article serves as an update to one in 2008 “Measures of Follow-Up in Early Hearing Detection and Intervention Programs: A Need for Standardization.”

Improving Health No BackgroundImproving Health

Muscular Dystrophy Coordinating Committee

Members of the RDHO team attended a meeting of the Muscular Dystrophy Coordinating Committee (MDCC) in Washington, DC on November 29. Held twice annually and hosted by NIH, the MDCC coordinates muscular dystrophy activities and programs across federal agencies and patient organizations.

Helping Everybody to Quit Smoking

Check out the CDC Feature that the Disability and Health branch worked on with NCCDPHP’s Office of Smoking and Health called Helping Everybody to Quit Smoking. It highlights the disparities in smoking rates between people with disabilities and those without, and ways in which public health programs across the country can be more inclusive to people with disabilities.

Save the Date for 2017 Sibling Leadership Network National Conference

When: June 24, 2017, 8:30 AM–5:30 PM ET & June 25, 2017, 8:30 AM– 2:00 PM ET
Where: Hartford, Connecticut
Registration Fee: $125 per person, includes 3 meals
More Details Coming Soon. Click Save the Date flyer for Save the Date flyer.

To ensure you receive updates, sign up at: http://siblingleadership.org/get-involved/join-sln/

Who should attend the conference?

  • Siblings of people with disabilities. The conference is for adults and is welcome to siblings who have a brother or sister with any type of disability.
  • People with disabilities. Self-advocates are important to the sibling movement and we encourage people with disabilities to come and share your sibling perspective.
  • Parents and family members. Families can learn a lot at this conference and share their perspectives.
  • Professionals. Professionals, including researchers, can gain a stronger understanding of the sibling relationship and ways to support siblings throughout the lifespan.
  • Sibling supporters. Anyone who is a friend or colleague to siblings and their families is welcome.
News from NCBDDD

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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 1/9/2017. 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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